Re: Hello & thank you for accepting my request

[Guest guest]

Hi, Angelina,

I went to DS support groups when was a baby and it just about broke my

heart. He was relatively precocious, physically, but socially, nothing. I saw

the other babies sitting contentedly, looking at their mommies and smiling, etc.

was rolling all around, pulling up, looking and interacting with no one,

not even me. Eye contact was nil. It was very difficult!

got the dual dx at 3. His Early Intervention people were all very

surprised. They kept telling me that no, there was a vision problem, or it was

his hearing, but he wasn't autistic because he liked looking at picture books.

I was not at all surprised. Because when he looked at picture books, he never

looked at me, to share a smile. His older two brothers have mild Asperger's, a

high-functioning form of autism. I had them tested after 's diagnosis

(which was made based on clinical observation, with very little formal testing).

has always been very independent, self-sufficient. He wasn't learning to

communicate at all, but was good at things like puzzles. He's communicating

better now (using a talker, sign and Pecs) but it's definitely hugely delayed.

Sent from my iPhone

> Hello all - I'm an American who lives in London with a beautiful daughter,

(turns 6 next week), and Liam (2.5 y/o). Liam has DS but has not been

given a dual diagnosis. I've joined this group to read about your experiences

with ASD and other issues. I've been very suspicious of Liam's condition

especially around 1 y/o when he clearly was not like the other children of a

similar age with DS. Many friends blamed his many medical problems (heart,

repiratory, etc) on his lack of progress; many professionals also believe this

and also stated that he is severely delayed strictly due to the DS. This has led

to quite a depressing time for me. In order to cope with Liam's very slow

progress, I've had to distance myself from the DS support groups - it's too hard

to see the other children doing so well and Liam having little to nothing in

common with then except with what's common with all children (little quirks and

things). I've said to my husband many times that Liam doesn't 'fit' in with his

peers.

>

> I've spoken to Liam's pediatrician about this and he said that a dual

diagnosis is still too soon for Liam and we'll have to wait until he's in school

properly (5-6) just to start any assessments. However, Liam's speech therapist

(who said he absolutely does not have Autism) has encouraged Liam's pediatrician

to refer Liam to a center who does a range of things, but also can identify

Autism. We're hoping that comes through sooner rather than later.

>

> Currently, Liam rarely focuses on us or his carers. He will rarely look at his

toys but instead explores with his hands to find things. He does not sit up, but

can roll around to get where he wants to go. He looks at lights. He used to

grunt ALL of the time, but his epilepsy kicked in again and coincidently, the

grunting went away. He has very poor tone and tires easily. This is not an

exhaustive list of things going on, but I'm hoping that some of this is familiar

to someone and can receive advice on what worked to get their child focusing on

them rather than the lights!!

>

> Thanks for reading!

> Angelina

>

>

[Guest guest]

Thanks ,

Liam also does not smile or laugh. It took a lot of effort a few months back of

intense tickling to get him to give me a 5 sec laugh. He does not have a clear

understanding of who I am nor strangers. He does not react if i'm not in the

room or if a stranger holds him. This also gives it away for me that he's

different as the other children, even younger, will react to these things.

It's interesting to note that your child's dx was noted at 3. I hope that our

referral to the Wolfson Centre will be successful.

Thanks for your response!

Angelina x

>

> > Hello all - I'm an American who lives in London with a beautiful daughter,

(turns 6 next week), and Liam (2.5 y/o). Liam has DS but has not been

given a dual diagnosis. I've joined this group to read about your experiences

with ASD and other issues. I've been very suspicious of Liam's condition

especially around 1 y/o when he clearly was not like the other children of a

similar age with DS. Many friends blamed his many medical problems (heart,

repiratory, etc) on his lack of progress; many professionals also believe this

and also stated that he is severely delayed strictly due to the DS. This has led

to quite a depressing time for me. In order to cope with Liam's very slow

progress, I've had to distance myself from the DS support groups - it's too hard

to see the other children doing so well and Liam having little to nothing in

common with then except with what's common with all children (little quirks and

things). I've said to my husband many times that Liam doesn't 'fit' in with his

peers.

> >

> > I've spoken to Liam's pediatrician about this and he said that a dual

diagnosis is still too soon for Liam and we'll have to wait until he's in school

properly (5-6) just to start any assessments. However, Liam's speech therapist

(who said he absolutely does not have Autism) has encouraged Liam's pediatrician

to refer Liam to a center who does a range of things, but also can identify

Autism. We're hoping that comes through sooner rather than later.

> >

> > Currently, Liam rarely focuses on us or his carers. He will rarely look at

his toys but instead explores with his hands to find things. He does not sit up,

but can roll around to get where he wants to go. He looks at lights. He used to

grunt ALL of the time, but his epilepsy kicked in again and coincidently, the

grunting went away. He has very poor tone and tires easily. This is not an

exhaustive list of things going on, but I'm hoping that some of this is familiar

to someone and can receive advice on what worked to get their child focusing on

them rather than the lights!!

> >

> > Thanks for reading!

> > Angelina

> >

> >

>

>

>

[Guest guest]

Welcome to the list. Just to let you know that Mom's feelings may be more

right than any so-called professional.

My son was weird, strange, and different from any other child I had ever

seen - and as a pediatric nurse, mother of 5 at that time, and foster mother

for about 20 years when he was born, I had seen strange kids.

Still, it took me until he was 10 years old to find out WHY? And I heard

all the things you heard.

Now children with ASD are being dx at ever earlier ages. PUSH _ASK_ REQUEST

- do what ever it takes to get him to a place where he can get a proper dx

BEFORE school. I believe it does make a difference in the things that are

focused on and in the end in the quality of life you and your family will

have! one of the first things which made a difference was the evaluation

of his sensory needs. This one thing gave us a focus to help us help our

son be comfortable in his own skin - even walk, chewing, swallowing became

issues we could address in the sensory realm. Helping our son focus on

sequences and using picture exchange systems helped.

When he was labeled " amongst the more severely affected kids with DS " - as

one doc wrote, he was pretty much written off. When he was dx with DS/ASD -

all of a sudden there were more answers.

BUT - a cautionary note: Just because he may have ASD does not mean that

this magic will turn him into a DS Super Kid. But at least you will

understand better what his needs are - outside of the health issues.

Sara - mom of 6, with Elie, age 26 DS/ASD.

> **

>

>

> Hello all - I'm an American who lives in London with a beautiful daughter,

> (turns 6 next week), and Liam (2.5 y/o). Liam has DS but has not been

> given a dual diagnosis. I've joined this group to read about your

> experiences with ASD and other issues. I've been very suspicious of Liam's

> condition especially around 1 y/o when he clearly was not like the other

> children of a similar age with DS. Many friends blamed his many medical

> problems (heart, repiratory, etc) on his lack of progress; many

> professionals also believe this and also stated that he is severely delayed

> strictly due to the DS. This has led to quite a depressing time for me. In

> order to cope with Liam's very slow progress, I've had to distance myself

> from the DS support groups - it's too hard to see the other children doing

> so well and Liam having little to nothing in common with then except with

> what's common with all children (little quirks and things). I've said to my

> husband many times that Liam doesn't 'fit' in with his peers.

>

> I've spoken to Liam's pediatrician about this and he said that a dual

> diagnosis is still too soon for Liam and we'll have to wait until he's in

> school properly (5-6) just to start any assessments. However, Liam's speech

> therapist (who said he absolutely does not have Autism) has encouraged

> Liam's pediatrician to refer Liam to a center who does a range of things,

> but also can identify Autism. We're hoping that comes through sooner rather

> than later.

>

> Currently, Liam rarely focuses on us or his carers. He will rarely look at

> his toys but instead explores with his hands to find things. He does not sit

> up, but can roll around to get where he wants to go. He looks at lights. He

> used to grunt ALL of the time, but his epilepsy kicked in again and

> coincidently, the grunting went away. He has very poor tone and tires

> easily. This is not an exhaustive list of things going on, but I'm hoping

> that some of this is familiar to someone and can receive advice on what

> worked to get their child focusing on them rather than the lights!!

>

> Thanks for reading!

> Angelina

>

>

>

--

Sara- different pathways lead to Nirvana.

[Guest guest]

Thank you all so much for your responses! I will definitely print off those

articles. My husband and I are not ones to back down on any issue! But not

knowing very much about DS-ASD and having a gut feeling is not enough for these

professionals - even though they know us by now and we're usually right when it

comes to Liam!! Watch this space! angelina x

>

> > **

> >

> >

> > Hello all - I'm an American who lives in London with a beautiful daughter,

> > (turns 6 next week), and Liam (2.5 y/o). Liam has DS but has not been

> > given a dual diagnosis. I've joined this group to read about your

> > experiences with ASD and other issues. I've been very suspicious of Liam's

> > condition especially around 1 y/o when he clearly was not like the other

> > children of a similar age with DS. Many friends blamed his many medical

> > problems (heart, repiratory, etc) on his lack of progress; many

> > professionals also believe this and also stated that he is severely delayed

> > strictly due to the DS. This has led to quite a depressing time for me. In

> > order to cope with Liam's very slow progress, I've had to distance myself

> > from the DS support groups - it's too hard to see the other children doing

> > so well and Liam having little to nothing in common with then except with

> > what's common with all children (little quirks and things). I've said to my

> > husband many times that Liam doesn't 'fit' in with his peers.

> >

> > I've spoken to Liam's pediatrician about this and he said that a dual

> > diagnosis is still too soon for Liam and we'll have to wait until he's in

> > school properly (5-6) just to start any assessments. However, Liam's speech

> > therapist (who said he absolutely does not have Autism) has encouraged

> > Liam's pediatrician to refer Liam to a center who does a range of things,

> > but also can identify Autism. We're hoping that comes through sooner rather

> > than later.

> >

> > Currently, Liam rarely focuses on us or his carers. He will rarely look at

> > his toys but instead explores with his hands to find things. He does not sit

> > up, but can roll around to get where he wants to go. He looks at lights. He

> > used to grunt ALL of the time, but his epilepsy kicked in again and

> > coincidently, the grunting went away. He has very poor tone and tires

> > easily. This is not an exhaustive list of things going on, but I'm hoping

> > that some of this is familiar to someone and can receive advice on what

> > worked to get their child focusing on them rather than the lights!!

> >

> > Thanks for reading!

> > Angelina

> >

> >

> >

>

>

>

> --

> Sara- different pathways lead to Nirvana.

>

>

>

[Guest guest]

Hi,

Our developmental ped has gotten some criticism for being quick to dual-dx our

kids. However, the dx gets them help and services, which is a good thing. I

dunno. She noted back when he was about 6 months old that he had " delayed

visual attentiveness " and said it was a red flag. By 2, she called him

" complicated " and strongly suspected autism. At 3, she had him do some tasks.

The puzzles were great, he surprised us with how well he did. He did some

matching, too. But when she gave him a doll, he threw it and pulled it's hair.

She said " Baby's hungry " and nothing. She rolled a ball to him and he rolled

it, but not to her. It was all about him and the ball. So he was showing no

" social reciprocity " .

I knew, though. When I'd meet another child with just DS, it was so obvious.

The other child would look at me, look at his mom or dad to make sure it was OK,

then smile a hello. They'd walk off to look at something, but glance over at

mon/dad to " check in " . never did this. I think it's called " social

referencing " , when a child looks to the caregiver to make sure things are ok.

had none. Has none. If he wants to go somewhere, he just goes, no

reference to me at all. No sense of danger, either. It's scary.

In happier news, he's doing a lot better than he was. Still a runner, but will

listen sometimes. He communicates some wants, including stuff like " I want

sister Row Row your Boat " or " I want Wrestle " on his talker. Only a

couple of months ago, I was frustrated because 's only way to say " let's

play " was to fling something at his siblings' head. Now, things are much much

better. . Also, I signed " I love you " to him this week, and he signed it back.

Getting him the *right* support for his autism has made a world of difference.

Keep fighting for Liam!

Sent from my iPhone

> Thanks ,

>

> Liam also does not smile or laugh. It took a lot of effort a few months back

of intense tickling to get him to give me a 5 sec laugh. He does not have a

clear understanding of who I am nor strangers. He does not react if i'm not in

the room or if a stranger holds him. This also gives it away for me that he's

different as the other children, even younger, will react to these things.

>

> It's interesting to note that your child's dx was noted at 3. I hope that our

referral to the Wolfson Centre will be successful.

>

> Thanks for your response!

> Angelina x

>

>

> >

> > > Hello all - I'm an American who lives in London with a beautiful daughter,

(turns 6 next week), and Liam (2.5 y/o). Liam has DS but has not been

given a dual diagnosis. I've joined this group to read about your experiences

with ASD and other issues. I've been very suspicious of Liam's condition

especially around 1 y/o when he clearly was not like the other children of a

similar age with DS. Many friends blamed his many medical problems (heart,

repiratory, etc) on his lack of progress; many professionals also believe this

and also stated that he is severely delayed strictly due to the DS. This has led

to quite a depressing time for me. In order to cope with Liam's very slow

progress, I've had to distance myself from the DS support groups - it's too hard

to see the other children doing so well and Liam having little to nothing in

common with then except with what's common with all children (little quirks and

things). I've said to my husband many times that Liam doesn't 'fit' in with his

peers.

> > >

> > > I've spoken to Liam's pediatrician about this and he said that a dual

diagnosis is still too soon for Liam and we'll have to wait until he's in school

properly (5-6) just to start any assessments. However, Liam's speech therapist

(who said he absolutely does not have Autism) has encouraged Liam's pediatrician

to refer Liam to a center who does a range of things, but also can identify

Autism. We're hoping that comes through sooner rather than later.

> > >

> > > Currently, Liam rarely focuses on us or his carers. He will rarely look at

his toys but instead explores with his hands to find things. He does not sit up,

but can roll around to get where he wants to go. He looks at lights. He used to

grunt ALL of the time, but his epilepsy kicked in again and coincidently, the

grunting went away. He has very poor tone and tires easily. This is not an

exhaustive list of things going on, but I'm hoping that some of this is familiar

to someone and can receive advice on what worked to get their child focusing on

them rather than the lights!!

> > >

> > > Thanks for reading!

> > > Angelina

> > >

> > >

> >

> >

> >

[Guest guest]

Welcome to the group! What you are going through sounds like what I went through

with my son at that age. Facial recognition has always been an issue, as well as

shying away from social interaction and most " toys " . Even now that he is almost

7, we still have issues with the toys. He prefers to play with half full water

bottles, and spin while holding clothing. I do have a suggestion, that I got

from a mom who had been there and done that, but I will always pass along her

warning. She suggested that if ur child is showing interest in hands, how about

trying to communicate using sign language? Even if it's just one sign, it will

give u time with your child, which you may be lacking now due to the lack of

social interaction, and it may stimulate your child into wanting more. This was

extremely helpful for me and my son, since he was my first child and I almost

needed some interaction out of selfishness. After lots of tears and frustrating

times, my son finally gave me what I had been wanting for so long: he actually

reached for my hand! I knew what he was wanting, and it wasn't really me, but he

was wanting me to interact with him for the first time. Over time, he would look

to me to sign new things to him, which satisfied his needs of exploring through

his hands as well as my need of wanting to interact with my child. Hope this

helps.

mom to Cody (6.5 DS/ASD) and Stormie (2.5)

[Guest guest]

My heart goes out to you.

My daughter was not diagnosed with autism until age 10. The school district

still does not recognize her as autistic, and for us, this is a plus! She

would be even more isolated and segregated than she is now, if the ASD was

added on earlier!

Everything was explained as " typical " for Downs children, and if that did

not fit, She " possibly had a seizure " , or, once her hearing impairment was

recognized, it was explained as " hearing-related defiant behavior " . It was a

very savvy therapist at CHOP Philadelphia who was able to make the

diagnosis.

It is still a struggle, at age 15, but we look back, and are very glad the

diagnosis was missed early. We already used the Greenspan model for behavior

modification, and used sign language also, not knowing she had ASD or was

hearing impaired. Like I said, we got lucky! I knew she had behavior

problems for a long time, and I researched many models for behavior

management, and went to the state dept of education workshops for years, to

get ideas. In restrospect, we did choose the right one for her, and we

insisted the school district adopt the same plan. I am still trying to get

sign language for all speech impaired children, because it works to lessen

the tantrums, if the child can effectively communicate his needs, thoughts,

fears, etc. I see a small glimmer of hope, because the new teachers coming

up are being taught a universal education model, that uses all the senses.

This has worked in Vermont for years! Finally, someone recognizes that we do

not all learn the same way. The statistics prove that typical children

actually learn faster and have higher test scores, when exposed to this

model. There is hope. Her best friend is in the gifted program at our

school.

On Sun, Sep 11, 2011 at 11:16 AM, wrote:

> **

>

>

> Welcome to the group! What you are going through sounds like what I went

> through with my son at that age. Facial recognition has always been an

> issue, as well as shying away from social interaction and most " toys " . Even

> now that he is almost 7, we still have issues with the toys. He prefers to

> play with half full water bottles, and spin while holding clothing. I do

> have a suggestion, that I got from a mom who had been there and done that,

> but I will always pass along her warning. She suggested that if ur child is

> showing interest in hands, how about trying to communicate using sign

> language? Even if it's just one sign, it will give u time with your child,

> which you may be lacking now due to the lack of social interaction, and it

> may stimulate your child into wanting more. This was extremely helpful for

> me and my son, since he was my first child and I almost needed some

> interaction out of selfishness. After lots of tears and frustrating times,

> my son finally gave me what I had been wanting for so long: he actually

> reached for my hand! I knew what he was wanting, and it wasn't really me,

> but he was wanting me to interact with him for the first time. Over time, he

> would look to me to sign new things to him, which satisfied his needs of

> exploring through his hands as well as my need of wanting to interact with

> my child. Hope this helps.

>

> mom to Cody (6.5 DS/ASD) and Stormie (2.5)

>

>

>

[Guest guest]

We also used sign with Elie and one of the signs was LOOK AT MY MOUTH/Face>

We still use that sometimes when he is having trouble understanding - that

helps him move his focus from his own hands, toy, object on the other side

of the room, reflection - what ever!! It also is beginning (at 26yo) to see

emotions especially if we want him to know ifweare happy , sad, very quiet,

help me. HE is finally recognizing facial signals if they are BIG ENOUGH.

I must disagree with Ariella about knowing about ASD. . For us the

recognition by the s/d of his additional dx changed everything. Funny - we

were in PA too at that time. But we used the clinic at Hershey Medical

Center rather than CHOP or Dupont.

One thing we learned at HErshey which could be emulated anyplace - and I

feel, should be, is the team approach. We had a few day long visits where

the Developmental ped, the educational consultant, the child psych,

hearing/OT/PT/SLP all worked together in their own disciplines to come to a

consensus of what would help. The educational consultant was especially

helpful for me to take to the school, as was the OT for sensory. We went to

several session with the SLP and then had a consult from her for the school

as well.

While our son has a 30% hearing loss in low tones, bilaterally, we all

decided that was NOT a disadvantage for our son. IT helped block some of

the things that were so frightening to him - loud sounds as an example.

Oh - we also used the Greenspan approach for modification of behavior

until he reached an understanding of PRIMACK PRINCIPLES. Once he began to

understand first this, then that, we started being able to reward

compliance which increased cooperation, learned waiting, etc.

> My heart goes out to you.

> My daughter was not diagnosed with autism until age 10. The school district

> still does not recognize her as autistic, and for us, this is a plus! She

> would be even more isolated and segregated than she is now, if the ASD was

> added on earlier!

> Everything was explained as " typical " for Downs children, and if that did

> not fit, She " possibly had a seizure " , or, once her hearing impairment was

> recognized, it was explained as " hearing-related defiant behavior " . It was

> a

> very savvy therapist at CHOP Philadelphia who was able to make the

> diagnosis.

> It is still a struggle, at age 15, but we look back, and are very glad the

> diagnosis was missed early. We already used the Greenspan model for

> behavior

> modification, and used sign language also, not knowing she had ASD or was

> hearing impaired. Like I said, we got lucky! I knew she had behavior

> problems for a long time, and I researched many models for behavior

> management, and went to the state dept of education workshops for years, to

> get ideas. In restrospect, we did choose the right one for her, and we

> insisted the school district adopt the same plan. I am still trying to get

> sign language for all speech impaired children, because it works to lessen

> the tantrums, if the child can effectively communicate his needs, thoughts,

> fears, etc. I see a small glimmer of hope, because the new teachers coming

> up are being taught a universal education model, that uses all the senses.

> This has worked in Vermont for years! Finally, someone recognizes that we

> do

> not all learn the same way. The statistics prove that typical children

> actually learn faster and have higher test scores, when exposed to this

> model. There is hope. Her best friend is in the gifted program at our

> school.

>

> On Sun, Sep 11, 2011 at 11:16 AM, <mom4dakotariley@...

> >wrote:

>

> > **

> >

> >

> > Welcome to the group! What you are going through sounds like what I went

> > through with my son at that age. Facial recognition has always been an

> > issue, as well as shying away from social interaction and most " toys " .

> Even

> > now that he is almost 7, we still have issues with the toys. He prefers

> to

> > play with half full water bottles, and spin while holding clothing. I do

> > have a suggestion, that I got from a mom who had been there and done

> that,

> > but I will always pass along her warning. She suggested that if ur child

> is

> > showing interest in hands, how about trying to communicate using sign

> > language? Even if it's just one sign, it will give u time with your

> child,

> > which you may be lacking now due to the lack of social interaction, and

> it

> > may stimulate your child into wanting more. This was extremely helpful

> for

> > me and my son, since he was my first child and I almost needed some

> > interaction out of selfishness. After lots of tears and frustrating

> times,

> > my son finally gave me what I had been wanting for so long: he actually

> > reached for my hand! I knew what he was wanting, and it wasn't really me,

> > but he was wanting me to interact with him for the first time. Over time,

> he

> > would look to me to sign new things to him, which satisfied his needs of

> > exploring through his hands as well as my need of wanting to interact

> with

> > my child. Hope this helps.

> >

> > mom to Cody (6.5 DS/ASD) and Stormie (2.5)

> >

> >

> >

>

>

>

[Guest guest]

We have also integrated signs such as look at me and listen to me. This has

helped with focus on important issues and instructions. I have realized though

that if overused, they become ineffective for a time.

[Guest guest]

, you are so right.

Like I said, we got lucky. It was luck that that brought us to the right

solutions for the time. If we had the ASD diagnosis, my daughter would have

been farmed out to a " special school " for " those kids " . Her whole

educational plan would have been radically different. Our school district

loves to send to other schools, those children who do not easily " fit in " .

Only in that area is what I mean by it was better for us, looking back. I

apologize for the misunderstanding I created.

There are drawbacks, for sure, and there is no doubt a lot of services that

my daughter should have had, but I don't know what they are, or how to get

them. We have been on this journey of discovery alone, with our daughter for

15 years. Until very recently, I thought my daugher was the only child who

had both ASD and Downs.

Reading the messages here has been a real eye-opener to me. I hear a lot of

things that we all have in common, that I never would have related, such as

the issues with toilet training. I always thought that was because of her

intestines. Now I see that could be more cognitive, seeing how so many of

our children have the same issue, for example.

I know I will gain a lot from this group. For the first time, I do not feel

alone.

> **

>

>

> We also used sign with Elie and one of the signs was LOOK AT MY MOUTH/Face>

> We still use that sometimes when he is having trouble understanding - that

> helps him move his focus from his own hands, toy, object on the other side

> of the room, reflection - what ever!! It also is beginning (at 26yo) to see

> emotions especially if we want him to know ifweare happy , sad, very quiet,

> help me. HE is finally recognizing facial signals if they are BIG ENOUGH.

>

> I must disagree with Ariella about knowing about ASD. . For us the

> recognition by the s/d of his additional dx changed everything. Funny - we

> were in PA too at that time. But we used the clinic at Hershey Medical

> Center rather than CHOP or Dupont.

>

> One thing we learned at HErshey which could be emulated anyplace - and I

> feel, should be, is the team approach. We had a few day long visits where

> the Developmental ped, the educational consultant, the child psych,

> hearing/OT/PT/SLP all worked together in their own disciplines to come to a

> consensus of what would help. The educational consultant was especially

> helpful for me to take to the school, as was the OT for sensory. We went to

> several session with the SLP and then had a consult from her for the school

> as well.

>

> While our son has a 30% hearing loss in low tones, bilaterally, we all

> decided that was NOT a disadvantage for our son. IT helped block some of

> the things that were so frightening to him - loud sounds as an example.

>

> Oh - we also used the Greenspan approach for modification of behavior

> until he reached an understanding of PRIMACK PRINCIPLES. Once he began to

> understand first this, then that, we started being able to reward

> compliance which increased cooperation, learned waiting, etc.

>

>

>

>

> > My heart goes out to you.

> > My daughter was not diagnosed with autism until age 10. The school

> district

> > still does not recognize her as autistic, and for us, this is a plus! She

> > would be even more isolated and segregated than she is now, if the ASD

> was

> > added on earlier!

> > Everything was explained as " typical " for Downs children, and if that did

> > not fit, She " possibly had a seizure " , or, once her hearing impairment

> was

> > recognized, it was explained as " hearing-related defiant behavior " . It

> was

> > a

> > very savvy therapist at CHOP Philadelphia who was able to make the

> > diagnosis.

> > It is still a struggle, at age 15, but we look back, and are very glad

> the

> > diagnosis was missed early. We already used the Greenspan model for

> > behavior

> > modification, and used sign language also, not knowing she had ASD or was

> > hearing impaired. Like I said, we got lucky! I knew she had behavior

> > problems for a long time, and I researched many models for behavior

> > management, and went to the state dept of education workshops for years,

> to

> > get ideas. In restrospect, we did choose the right one for her, and we

> > insisted the school district adopt the same plan. I am still trying to

> get

> > sign language for all speech impaired children, because it works to

> lessen

> > the tantrums, if the child can effectively communicate his needs,

> thoughts,

> > fears, etc. I see a small glimmer of hope, because the new teachers

> coming

> > up are being taught a universal education model, that uses all the

> senses.

> > This has worked in Vermont for years! Finally, someone recognizes that we

> > do

> > not all learn the same way. The statistics prove that typical children

> > actually learn faster and have higher test scores, when exposed to this

> > model. There is hope. Her best friend is in the gifted program at our

> > school.

> >

> > On Sun, Sep 11, 2011 at 11:16 AM, <mom4dakotariley@...

> > >wrote:

> >

> > > **

> > >

> > >

> > > Welcome to the group! What you are going through sounds like what I

> went

> > > through with my son at that age. Facial recognition has always been an

> > > issue, as well as shying away from social interaction and most " toys " .

> > Even

> > > now that he is almost 7, we still have issues with the toys. He prefers

> > to

> > > play with half full water bottles, and spin while holding clothing. I

> do

> > > have a suggestion, that I got from a mom who had been there and done

> > that,

> > > but I will always pass along her warning. She suggested that if ur

> child

> > is

> > > showing interest in hands, how about trying to communicate using sign

> > > language? Even if it's just one sign, it will give u time with your

> > child,

> > > which you may be lacking now due to the lack of social interaction, and

> > it

> > > may stimulate your child into wanting more. This was extremely helpful

> > for

> > > me and my son, since he was my first child and I almost needed some

> > > interaction out of selfishness. After lots of tears and frustrating

> > times,

> > > my son finally gave me what I had been wanting for so long: he actually

> > > reached for my hand! I knew what he was wanting, and it wasn't really

> me,

> > > but he was wanting me to interact with him for the first time. Over

> time,

> > he

> > > would look to me to sign new things to him, which satisfied his needs

> of

> > > exploring through his hands as well as my need of wanting to interact

> > with

> > > my child. Hope this helps.

> > >

> > > mom to Cody (6.5 DS/ASD) and Stormie (2.5)

> > >

> > >

> > >

> >

> >

> >

[Guest guest]

Ariella, you are not alone. And you are not alone in the area in which you

live. There are several members in the Philly area!

One of the reasons we moved to a suburb of PA was for the plethora of

schools. We found our s/d very non-responsive at 15 to our son's needs.

They gave us the option of finding a private (APS) school or using the stand

alone Intermediate unit school nearly across the street from our home. So

we tried it. Started in Sept, but Oct I realized it was a mistake and by

January found another school and moved him. For 5 years he attended the

son School at Elwyn. I would have preferred the MELMARK school where

MAddie goes (Donna Duffy can tell you about it) but Elie did not fit in

there. I also explored the CAMPHILL SCHOOL for special kids, but Elie HATED

the atmosphere. His panic was awful to see. While the son school was

not much to my liking to begin with (totally segregated, 45 minutes from

our home, ), Elie LOVED it - from the minute he walked in the door and

noticed the paintings on the ceiling!! AAnd their behavior mod program

worked for him. He was loved and cared for there - Something I will never

take for granted - he was never abused or mistreated there.

> , you are so right.

> Like I said, we got lucky. It was luck that that brought us to the right

> solutions for the time. If we had the ASD diagnosis, my daughter would have

> been farmed out to a " special school " for " those kids " . Her whole

> educational plan would have been radically different. Our school district

> loves to send to other schools, those children who do not easily " fit in " .

> Only in that area is what I mean by it was better for us, looking back. I

> apologize for the misunderstanding I created.

> There are drawbacks, for sure, and there is no doubt a lot of services that

> my daughter should have had, but I don't know what they are, or how to get

> them. We have been on this journey of discovery alone, with our daughter

> for

> 15 years. Until very recently, I thought my daugher was the only child who

> had both ASD and Downs.

> Reading the messages here has been a real eye-opener to me. I hear a lot of

> things that we all have in common, that I never would have related, such as

> the issues with toilet training. I always thought that was because of her

> intestines. Now I see that could be more cognitive, seeing how so many of

> our children have the same issue, for example.

> I know I will gain a lot from this group. For the first time, I do not feel

> alone.

>

> On Sun, Sep 11, 2011 at 12:30 PM, Sara Cohen

> wrote:

>

> > **

> >

> >

> > We also used sign with Elie and one of the signs was LOOK AT MY

> MOUTH/Face>

> > We still use that sometimes when he is having trouble understanding -

> that

> > helps him move his focus from his own hands, toy, object on the other

> side

> > of the room, reflection - what ever!! It also is beginning (at 26yo) to

> see

> > emotions especially if we want him to know ifweare happy , sad, very

> quiet,

> > help me. HE is finally recognizing facial signals if they are BIG ENOUGH.

> >

> > I must disagree with Ariella about knowing about ASD. . For us the

> > recognition by the s/d of his additional dx changed everything. Funny -

> we

> > were in PA too at that time. But we used the clinic at Hershey Medical

> > Center rather than CHOP or Dupont.

> >

> > One thing we learned at HErshey which could be emulated anyplace - and I

> > feel, should be, is the team approach. We had a few day long visits where

> > the Developmental ped, the educational consultant, the child psych,

> > hearing/OT/PT/SLP all worked together in their own disciplines to come to

> a

> > consensus of what would help. The educational consultant was especially

> > helpful for me to take to the school, as was the OT for sensory. We went

> to

> > several session with the SLP and then had a consult from her for the

> school

> > as well.

> >

> > While our son has a 30% hearing loss in low tones, bilaterally, we all

> > decided that was NOT a disadvantage for our son. IT helped block some of

> > the things that were so frightening to him - loud sounds as an example.

> >

> > Oh - we also used the Greenspan approach for modification of behavior

> > until he reached an understanding of PRIMACK PRINCIPLES. Once he began to

> > understand first this, then that, we started being able to reward

> > compliance which increased cooperation, learned waiting, etc.

> >

> >

> >

> >

> > > My heart goes out to you.

> > > My daughter was not diagnosed with autism until age 10. The school

> > district

> > > still does not recognize her as autistic, and for us, this is a plus!

> She

> > > would be even more isolated and segregated than she is now, if the ASD

> > was

> > > added on earlier!

> > > Everything was explained as " typical " for Downs children, and if that

> did

> > > not fit, She " possibly had a seizure " , or, once her hearing impairment

> > was

> > > recognized, it was explained as " hearing-related defiant behavior " . It

> > was

> > > a

> > > very savvy therapist at CHOP Philadelphia who was able to make the

> > > diagnosis.

> > > It is still a struggle, at age 15, but we look back, and are very glad

> > the

> > > diagnosis was missed early. We already used the Greenspan model for

> > > behavior

> > > modification, and used sign language also, not knowing she had ASD or

> was

> > > hearing impaired. Like I said, we got lucky! I knew she had behavior

> > > problems for a long time, and I researched many models for behavior

> > > management, and went to the state dept of education workshops for

> years,

> > to

> > > get ideas. In restrospect, we did choose the right one for her, and we

> > > insisted the school district adopt the same plan. I am still trying to

> > get

> > > sign language for all speech impaired children, because it works to

> > lessen

> > > the tantrums, if the child can effectively communicate his needs,

> > thoughts,

> > > fears, etc. I see a small glimmer of hope, because the new teachers

> > coming

> > > up are being taught a universal education model, that uses all the

> > senses.

> > > This has worked in Vermont for years! Finally, someone recognizes that

> we

> > > do

> > > not all learn the same way. The statistics prove that typical children

> > > actually learn faster and have higher test scores, when exposed to this

> > > model. There is hope. Her best friend is in the gifted program at our

> > > school.

> > >

> > > On Sun, Sep 11, 2011 at 11:16 AM, <mom4dakotariley@...

> > > >wrote:

> > >

> > > > **

> > > >

> > > >

> > > > Welcome to the group! What you are going through sounds like what I

> > went

> > > > through with my son at that age. Facial recognition has always been

> an

> > > > issue, as well as shying away from social interaction and most

> " toys " .

> > > Even

> > > > now that he is almost 7, we still have issues with the toys. He

> prefers

> > > to

> > > > play with half full water bottles, and spin while holding clothing. I

> > do

> > > > have a suggestion, that I got from a mom who had been there and done

> > > that,

> > > > but I will always pass along her warning. She suggested that if ur

> > child

> > > is

> > > > showing interest in hands, how about trying to communicate using sign

> > > > language? Even if it's just one sign, it will give u time with your

> > > child,

> > > > which you may be lacking now due to the lack of social interaction,

> and

> > > it

> > > > may stimulate your child into wanting more. This was extremely

> helpful

> > > for

> > > > me and my son, since he was my first child and I almost needed some

> > > > interaction out of selfishness. After lots of tears and frustrating

> > > times,

> > > > my son finally gave me what I had been wanting for so long: he

> actually

> > > > reached for my hand! I knew what he was wanting, and it wasn't really

> > me,

> > > > but he was wanting me to interact with him for the first time. Over

> > time,

> > > he

> > > > would look to me to sign new things to him, which satisfied his needs

> > of

> > > > exploring through his hands as well as my need of wanting to interact

> > > with

> > > > my child. Hope this helps.

> > > >

> > > > mom to Cody (6.5 DS/ASD) and Stormie (2.5)

> > > >

> > > >

> > > >

> > >

> > >

> > >

[Guest guest]

Thank you so much for this information. I did not want my daughter in a

private segregated school. I wanted her in public school, where I thought

she would do better, with the right supports. I am now rethinking, and

trying to find out what would be the best environment for her. She will be

going to High School next year, and I am so worried about that, because it

is not a good situation, from what I see. I am open to exploring all ideas

at this point.

> **

>

>

> Ariella, you are not alone. And you are not alone in the area in which you

> live. There are several members in the Philly area!

>

> One of the reasons we moved to a suburb of PA was for the plethora of

> schools. We found our s/d very non-responsive at 15 to our son's needs.

> They gave us the option of finding a private (APS) school or using the

> stand

> alone Intermediate unit school nearly across the street from our home. So

> we tried it. Started in Sept, but Oct I realized it was a mistake and by

> January found another school and moved him. For 5 years he attended the

> son School at Elwyn. I would have preferred the MELMARK school where

> MAddie goes (Donna Duffy can tell you about it) but Elie did not fit in

> there. I also explored the CAMPHILL SCHOOL for special kids, but Elie HATED

> the atmosphere. His panic was awful to see. While the son school was

> not much to my liking to begin with (totally segregated, 45 minutes from

> our home, ), Elie LOVED it - from the minute he walked in the door and

> noticed the paintings on the ceiling!! AAnd their behavior mod program

> worked for him. He was loved and cared for there - Something I will never

> take for granted - he was never abused or mistreated there.

>

>

>

>

> > , you are so right.

> > Like I said, we got lucky. It was luck that that brought us to the right

> > solutions for the time. If we had the ASD diagnosis, my daughter would

> have

> > been farmed out to a " special school " for " those kids " . Her whole

> > educational plan would have been radically different. Our school district

> > loves to send to other schools, those children who do not easily " fit

> in " .

> > Only in that area is what I mean by it was better for us, looking back. I

> > apologize for the misunderstanding I created.

> > There are drawbacks, for sure, and there is no doubt a lot of services

> that

> > my daughter should have had, but I don't know what they are, or how to

> get

> > them. We have been on this journey of discovery alone, with our daughter

> > for

> > 15 years. Until very recently, I thought my daugher was the only child

> who

> > had both ASD and Downs.

> > Reading the messages here has been a real eye-opener to me. I hear a lot

> of

> > things that we all have in common, that I never would have related, such

> as

> > the issues with toilet training. I always thought that was because of her

> > intestines. Now I see that could be more cognitive, seeing how so many of

> > our children have the same issue, for example.

> > I know I will gain a lot from this group. For the first time, I do not

> feel

> > alone.

> >

> > On Sun, Sep 11, 2011 at 12:30 PM, Sara Cohen

> > wrote:

> >

> > > **

> > >

> > >

> > > We also used sign with Elie and one of the signs was LOOK AT MY

> > MOUTH/Face>

> > > We still use that sometimes when he is having trouble understanding -

> > that

> > > helps him move his focus from his own hands, toy, object on the other

> > side

> > > of the room, reflection - what ever!! It also is beginning (at 26yo) to

> > see

> > > emotions especially if we want him to know ifweare happy , sad, very

> > quiet,

> > > help me. HE is finally recognizing facial signals if they are BIG

> ENOUGH.

> > >

> > > I must disagree with Ariella about knowing about ASD. . For us the

> > > recognition by the s/d of his additional dx changed everything. Funny -

> > we

> > > were in PA too at that time. But we used the clinic at Hershey Medical

> > > Center rather than CHOP or Dupont.

> > >

> > > One thing we learned at HErshey which could be emulated anyplace - and

> I

> > > feel, should be, is the team approach. We had a few day long visits

> where

> > > the Developmental ped, the educational consultant, the child psych,

> > > hearing/OT/PT/SLP all worked together in their own disciplines to come

> to

> > a

> > > consensus of what would help. The educational consultant was especially

> > > helpful for me to take to the school, as was the OT for sensory. We

> went

> > to

> > > several session with the SLP and then had a consult from her for the

> > school

> > > as well.

> > >

> > > While our son has a 30% hearing loss in low tones, bilaterally, we all

> > > decided that was NOT a disadvantage for our son. IT helped block some

> of

> > > the things that were so frightening to him - loud sounds as an example.

> > >

> > > Oh - we also used the Greenspan approach for modification of behavior

> > > until he reached an understanding of PRIMACK PRINCIPLES. Once he began

> to

> > > understand first this, then that, we started being able to reward

> > > compliance which increased cooperation, learned waiting, etc.

> > >

> > >

> > > On Sun, Sep 11, 2011 at 12:07 PM, ariella

> wrote:

> > >

> > > > My heart goes out to you.

> > > > My daughter was not diagnosed with autism until age 10. The school

> > > district

> > > > still does not recognize her as autistic, and for us, this is a plus!

> > She

> > > > would be even more isolated and segregated than she is now, if the

> ASD

> > > was

> > > > added on earlier!

> > > > Everything was explained as " typical " for Downs children, and if that

> > did

> > > > not fit, She " possibly had a seizure " , or, once her hearing

> impairment

> > > was

> > > > recognized, it was explained as " hearing-related defiant behavior " .

> It

> > > was

> > > > a

> > > > very savvy therapist at CHOP Philadelphia who was able to make the

> > > > diagnosis.

> > > > It is still a struggle, at age 15, but we look back, and are very

> glad

> > > the

> > > > diagnosis was missed early. We already used the Greenspan model for

> > > > behavior

> > > > modification, and used sign language also, not knowing she had ASD or

> > was

> > > > hearing impaired. Like I said, we got lucky! I knew she had behavior

> > > > problems for a long time, and I researched many models for behavior

> > > > management, and went to the state dept of education workshops for

> > years,

> > > to

> > > > get ideas. In restrospect, we did choose the right one for her, and

> we

> > > > insisted the school district adopt the same plan. I am still trying

> to

> > > get

> > > > sign language for all speech impaired children, because it works to

> > > lessen

> > > > the tantrums, if the child can effectively communicate his needs,

> > > thoughts,

> > > > fears, etc. I see a small glimmer of hope, because the new teachers

> > > coming

> > > > up are being taught a universal education model, that uses all the

> > > senses.

> > > > This has worked in Vermont for years! Finally, someone recognizes

> that

> > we

> > > > do

> > > > not all learn the same way. The statistics prove that typical

> children

> > > > actually learn faster and have higher test scores, when exposed to

> this

> > > > model. There is hope. Her best friend is in the gifted program at our

> > > > school.

> > > >

> > > > On Sun, Sep 11, 2011 at 11:16 AM, <

> mom4dakotariley@...

> > > > >wrote:

> > > >

> > > > > **

> > > > >

> > > > >

> > > > > Welcome to the group! What you are going through sounds like what I

> > > went

> > > > > through with my son at that age. Facial recognition has always been

> > an

> > > > > issue, as well as shying away from social interaction and most

> > " toys " .

> > > > Even

> > > > > now that he is almost 7, we still have issues with the toys. He

> > prefers

> > > > to

> > > > > play with half full water bottles, and spin while holding clothing.

> I

> > > do

> > > > > have a suggestion, that I got from a mom who had been there and

> done

> > > > that,

> > > > > but I will always pass along her warning. She suggested that if ur

> > > child

> > > > is

> > > > > showing interest in hands, how about trying to communicate using

> sign

> > > > > language? Even if it's just one sign, it will give u time with your

> > > > child,

> > > > > which you may be lacking now due to the lack of social interaction,

> > and

> > > > it

> > > > > may stimulate your child into wanting more. This was extremely

> > helpful

> > > > for

> > > > > me and my son, since he was my first child and I almost needed some

> > > > > interaction out of selfishness. After lots of tears and frustrating

> > > > times,

> > > > > my son finally gave me what I had been wanting for so long: he

> > actually

> > > > > reached for my hand! I knew what he was wanting, and it wasn't

> really

> > > me,

> > > > > but he was wanting me to interact with him for the first time. Over

> > > time,

> > > > he

> > > > > would look to me to sign new things to him, which satisfied his

> needs

> > > of

> > > > > exploring through his hands as well as my need of wanting to

> interact

> > > > with

> > > > > my child. Hope this helps.

> > > > >

> > > > > mom to Cody (6.5 DS/ASD) and Stormie (2.5)

> > > > >

> > > > >

> > > > >

> > > >

> > > >

> > > >

[Guest guest]

What community do you live in. - can give you a better idea of schools,

checked out or some directions.

> Thank you so much for this information. I did not want my daughter in a

> private segregated school. I wanted her in public school, where I thought

> she would do better, with the right supports. I am now rethinking, and

> trying to find out what would be the best environment for her. She will be

> going to High School next year, and I am so worried about that, because it

> is not a good situation, from what I see. I am open to exploring all ideas

> at this point.

>

>

>

> > **

> >

> >

> > Ariella, you are not alone. And you are not alone in the area in which

> you

> > live. There are several members in the Philly area!

> >

> > One of the reasons we moved to a suburb of PA was for the plethora of

> > schools. We found our s/d very non-responsive at 15 to our son's needs.

> > They gave us the option of finding a private (APS) school or using the

> > stand

> > alone Intermediate unit school nearly across the street from our home. So

> > we tried it. Started in Sept, but Oct I realized it was a mistake and by

> > January found another school and moved him. For 5 years he attended the

> > son School at Elwyn. I would have preferred the MELMARK school where

> > MAddie goes (Donna Duffy can tell you about it) but Elie did not fit in

> > there. I also explored the CAMPHILL SCHOOL for special kids, but Elie

> HATED

> > the atmosphere. His panic was awful to see. While the son school was

> > not much to my liking to begin with (totally segregated, 45 minutes from

> > our home, ), Elie LOVED it - from the minute he walked in the door and

> > noticed the paintings on the ceiling!! AAnd their behavior mod program

> > worked for him. He was loved and cared for there - Something I will never

> > take for granted - he was never abused or mistreated there.

> >

> >

> >

> >

> > > , you are so right.

> > > Like I said, we got lucky. It was luck that that brought us to the

> right

> > > solutions for the time. If we had the ASD diagnosis, my daughter would

> > have

> > > been farmed out to a " special school " for " those kids " . Her whole

> > > educational plan would have been radically different. Our school

> district

> > > loves to send to other schools, those children who do not easily " fit

> > in " .

> > > Only in that area is what I mean by it was better for us, looking back.

> I

> > > apologize for the misunderstanding I created.

> > > There are drawbacks, for sure, and there is no doubt a lot of services

> > that

> > > my daughter should have had, but I don't know what they are, or how to

> > get

> > > them. We have been on this journey of discovery alone, with our

> daughter

> > > for

> > > 15 years. Until very recently, I thought my daugher was the only child

> > who

> > > had both ASD and Downs.

> > > Reading the messages here has been a real eye-opener to me. I hear a

> lot

> > of

> > > things that we all have in common, that I never would have related,

> such

> > as

> > > the issues with toilet training. I always thought that was because of

> her

> > > intestines. Now I see that could be more cognitive, seeing how so many

> of

> > > our children have the same issue, for example.

> > > I know I will gain a lot from this group. For the first time, I do not

> > feel

> > > alone.

> > >

> > > On Sun, Sep 11, 2011 at 12:30 PM, Sara Cohen

> > > wrote:

> > >

> > > > **

> > > >

> > > >

> > > > We also used sign with Elie and one of the signs was LOOK AT MY

> > > MOUTH/Face>

> > > > We still use that sometimes when he is having trouble understanding -

> > > that

> > > > helps him move his focus from his own hands, toy, object on the other

> > > side

> > > > of the room, reflection - what ever!! It also is beginning (at 26yo)

> to

> > > see

> > > > emotions especially if we want him to know ifweare happy , sad, very

> > > quiet,

> > > > help me. HE is finally recognizing facial signals if they are BIG

> > ENOUGH.

> > > >

> > > > I must disagree with Ariella about knowing about ASD. . For us the

> > > > recognition by the s/d of his additional dx changed everything. Funny

> -

> > > we

> > > > were in PA too at that time. But we used the clinic at Hershey

> Medical

> > > > Center rather than CHOP or Dupont.

> > > >

> > > > One thing we learned at HErshey which could be emulated anyplace -

> and

> > I

> > > > feel, should be, is the team approach. We had a few day long visits

> > where

> > > > the Developmental ped, the educational consultant, the child psych,

> > > > hearing/OT/PT/SLP all worked together in their own disciplines to

> come

> > to

> > > a

> > > > consensus of what would help. The educational consultant was

> especially

> > > > helpful for me to take to the school, as was the OT for sensory. We

> > went

> > > to

> > > > several session with the SLP and then had a consult from her for the

> > > school

> > > > as well.

> > > >

> > > > While our son has a 30% hearing loss in low tones, bilaterally, we

> all

> > > > decided that was NOT a disadvantage for our son. IT helped block some

> > of

> > > > the things that were so frightening to him - loud sounds as an

> example.

> > > >

> > > > Oh - we also used the Greenspan approach for modification of behavior

> > > > until he reached an understanding of PRIMACK PRINCIPLES. Once he

> began

> > to

> > > > understand first this, then that, we started being able to reward

> > > > compliance which increased cooperation, learned waiting, etc.

> > > >

> > > >

> > > > On Sun, Sep 11, 2011 at 12:07 PM, ariella

> > wrote:

> > > >

> > > > > My heart goes out to you.

> > > > > My daughter was not diagnosed with autism until age 10. The school

> > > > district

> > > > > still does not recognize her as autistic, and for us, this is a

> plus!

> > > She

> > > > > would be even more isolated and segregated than she is now, if the

> > ASD

> > > > was

> > > > > added on earlier!

> > > > > Everything was explained as " typical " for Downs children, and if

> that

> > > did

> > > > > not fit, She " possibly had a seizure " , or, once her hearing

> > impairment

> > > > was

> > > > > recognized, it was explained as " hearing-related defiant behavior " .

> > It

> > > > was

> > > > > a

> > > > > very savvy therapist at CHOP Philadelphia who was able to make the

> > > > > diagnosis.

> > > > > It is still a struggle, at age 15, but we look back, and are very

> > glad

> > > > the

> > > > > diagnosis was missed early. We already used the Greenspan model for

> > > > > behavior

> > > > > modification, and used sign language also, not knowing she had ASD

> or

> > > was

> > > > > hearing impaired. Like I said, we got lucky! I knew she had

> behavior

> > > > > problems for a long time, and I researched many models for behavior

> > > > > management, and went to the state dept of education workshops for

> > > years,

> > > > to

> > > > > get ideas. In restrospect, we did choose the right one for her, and

> > we

> > > > > insisted the school district adopt the same plan. I am still trying

> > to

> > > > get

> > > > > sign language for all speech impaired children, because it works to

> > > > lessen

> > > > > the tantrums, if the child can effectively communicate his needs,

> > > > thoughts,

> > > > > fears, etc. I see a small glimmer of hope, because the new teachers

> > > > coming

> > > > > up are being taught a universal education model, that uses all the

> > > > senses.

> > > > > This has worked in Vermont for years! Finally, someone recognizes

> > that

> > > we

> > > > > do

> > > > > not all learn the same way. The statistics prove that typical

> > children

> > > > > actually learn faster and have higher test scores, when exposed to

> > this

> > > > > model. There is hope. Her best friend is in the gifted program at

> our

> > > > > school.

> > > > >

> > > > > On Sun, Sep 11, 2011 at 11:16 AM, <

> > mom4dakotariley@...

> > > > > >wrote:

> > > > >

> > > > > > **

> > > > > >

> > > > > >

> > > > > > Welcome to the group! What you are going through sounds like what

> I

> > > > went

> > > > > > through with my son at that age. Facial recognition has always

> been

> > > an

> > > > > > issue, as well as shying away from social interaction and most

> > > " toys " .

> > > > > Even

> > > > > > now that he is almost 7, we still have issues with the toys. He

> > > prefers

> > > > > to

> > > > > > play with half full water bottles, and spin while holding

> clothing.

> > I

> > > > do

> > > > > > have a suggestion, that I got from a mom who had been there and

> > done

> > > > > that,

> > > > > > but I will always pass along her warning. She suggested that if

> ur

> > > > child

> > > > > is

> > > > > > showing interest in hands, how about trying to communicate using

> > sign

> > > > > > language? Even if it's just one sign, it will give u time with

> your

> > > > > child,

> > > > > > which you may be lacking now due to the lack of social

> interaction,

> > > and

> > > > > it

> > > > > > may stimulate your child into wanting more. This was extremely

> > > helpful

> > > > > for

> > > > > > me and my son, since he was my first child and I almost needed

> some

> > > > > > interaction out of selfishness. After lots of tears and

> frustrating

> > > > > times,

> > > > > > my son finally gave me what I had been wanting for so long: he

> > > actually

> > > > > > reached for my hand! I knew what he was wanting, and it wasn't

> > really

> > > > me,

> > > > > > but he was wanting me to interact with him for the first time.

> Over

> > > > time,

> > > > > he

> > > > > > would look to me to sign new things to him, which satisfied his

> > needs

> > > > of

> > > > > > exploring through his hands as well as my need of wanting to

> > interact

> > > > > with

> > > > > > my child. Hope this helps.

> > > > > >

> > > > > > mom to Cody (6.5 DS/ASD) and Stormie (2.5)

> > > > > >

> > > > > >

> > > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

I live in South Eastern Montgomery County, PA., just outside of

Philadelphia.

Thank you so much for your help.

> **

>

>

> What community do you live in. - can give you a better idea of schools,

> checked out or some directions.

>

>

>

>

> > Thank you so much for this information. I did not want my daughter in a

> > private segregated school. I wanted her in public school, where I thought

> > she would do better, with the right supports. I am now rethinking, and

> > trying to find out what would be the best environment for her. She will

> be

> > going to High School next year, and I am so worried about that, because

> it

> > is not a good situation, from what I see. I am open to exploring all

> ideas

> > at this point.

> >

> > On Sun, Sep 11, 2011 at 1:00 PM, Sara Cohen

> wrote:

> >

> > > **

> > >

> > >

> > > Ariella, you are not alone. And you are not alone in the area in which

> > you

> > > live. There are several members in the Philly area!

> > >

> > > One of the reasons we moved to a suburb of PA was for the plethora of

> > > schools. We found our s/d very non-responsive at 15 to our son's needs.

> > > They gave us the option of finding a private (APS) school or using the

> > > stand

> > > alone Intermediate unit school nearly across the street from our home.

> So

> > > we tried it. Started in Sept, but Oct I realized it was a mistake and

> by

> > > January found another school and moved him. For 5 years he attended the

> > > son School at Elwyn. I would have preferred the MELMARK school

> where

> > > MAddie goes (Donna Duffy can tell you about it) but Elie did not fit in

> > > there. I also explored the CAMPHILL SCHOOL for special kids, but Elie

> > HATED

> > > the atmosphere. His panic was awful to see. While the son school

> was

> > > not much to my liking to begin with (totally segregated, 45 minutes

> from

> > > our home, ), Elie LOVED it - from the minute he walked in the door and

> > > noticed the paintings on the ceiling!! AAnd their behavior mod program

> > > worked for him. He was loved and cared for there - Something I will

> never

> > > take for granted - he was never abused or mistreated there.

> > >

> > >

> > > On Sun, Sep 11, 2011 at 12:51 PM, ariella

> wrote:

> > >

> > > > , you are so right.

> > > > Like I said, we got lucky. It was luck that that brought us to the

> > right

> > > > solutions for the time. If we had the ASD diagnosis, my daughter

> would

> > > have

> > > > been farmed out to a " special school " for " those kids " . Her whole

> > > > educational plan would have been radically different. Our school

> > district

> > > > loves to send to other schools, those children who do not easily " fit

> > > in " .

> > > > Only in that area is what I mean by it was better for us, looking

> back.

> > I

> > > > apologize for the misunderstanding I created.

> > > > There are drawbacks, for sure, and there is no doubt a lot of

> services

> > > that

> > > > my daughter should have had, but I don't know what they are, or how

> to

> > > get

> > > > them. We have been on this journey of discovery alone, with our

> > daughter

> > > > for

> > > > 15 years. Until very recently, I thought my daugher was the only

> child

> > > who

> > > > had both ASD and Downs.

> > > > Reading the messages here has been a real eye-opener to me. I hear a

> > lot

> > > of

> > > > things that we all have in common, that I never would have related,

> > such

> > > as

> > > > the issues with toilet training. I always thought that was because of

> > her

> > > > intestines. Now I see that could be more cognitive, seeing how so

> many

> > of

> > > > our children have the same issue, for example.

> > > > I know I will gain a lot from this group. For the first time, I do

> not

> > > feel

> > > > alone.

> > > >

> > > > On Sun, Sep 11, 2011 at 12:30 PM, Sara Cohen

> > > > wrote:

> > > >

> > > > > **

> > > > >

> > > > >

> > > > > We also used sign with Elie and one of the signs was LOOK AT MY

> > > > MOUTH/Face>

> > > > > We still use that sometimes when he is having trouble understanding

> -

> > > > that

> > > > > helps him move his focus from his own hands, toy, object on the

> other

> > > > side

> > > > > of the room, reflection - what ever!! It also is beginning (at

> 26yo)

> > to

> > > > see

> > > > > emotions especially if we want him to know ifweare happy , sad,

> very

> > > > quiet,

> > > > > help me. HE is finally recognizing facial signals if they are BIG

> > > ENOUGH.

> > > > >

> > > > > I must disagree with Ariella about knowing about ASD. . For us the

> > > > > recognition by the s/d of his additional dx changed everything.

> Funny

> > -

> > > > we

> > > > > were in PA too at that time. But we used the clinic at Hershey

> > Medical

> > > > > Center rather than CHOP or Dupont.

> > > > >

> > > > > One thing we learned at HErshey which could be emulated anyplace -

> > and

> > > I

> > > > > feel, should be, is the team approach. We had a few day long visits

> > > where

> > > > > the Developmental ped, the educational consultant, the child psych,

> > > > > hearing/OT/PT/SLP all worked together in their own disciplines to

> > come

> > > to

> > > > a

> > > > > consensus of what would help. The educational consultant was

> > especially

> > > > > helpful for me to take to the school, as was the OT for sensory. We

> > > went

> > > > to

> > > > > several session with the SLP and then had a consult from her for

> the

> > > > school

> > > > > as well.

> > > > >

> > > > > While our son has a 30% hearing loss in low tones, bilaterally, we

> > all

> > > > > decided that was NOT a disadvantage for our son. IT helped block

> some

> > > of

> > > > > the things that were so frightening to him - loud sounds as an

> > example.

> > > > >

> > > > > Oh - we also used the Greenspan approach for modification of

> behavior

> > > > > until he reached an understanding of PRIMACK PRINCIPLES. Once he

> > began

> > > to

> > > > > understand first this, then that, we started being able to reward

> > > > > compliance which increased cooperation, learned waiting, etc.

> > > > >

> > > > >

> > > > > On Sun, Sep 11, 2011 at 12:07 PM, ariella

> > > wrote:

> > > > >

> > > > > > My heart goes out to you.

> > > > > > My daughter was not diagnosed with autism until age 10. The

> school

> > > > > district

> > > > > > still does not recognize her as autistic, and for us, this is a

> > plus!

> > > > She

> > > > > > would be even more isolated and segregated than she is now, if

> the

> > > ASD

> > > > > was

> > > > > > added on earlier!

> > > > > > Everything was explained as " typical " for Downs children, and if

> > that

> > > > did

> > > > > > not fit, She " possibly had a seizure " , or, once her hearing

> > > impairment

> > > > > was

> > > > > > recognized, it was explained as " hearing-related defiant

> behavior " .

> > > It

> > > > > was

> > > > > > a

> > > > > > very savvy therapist at CHOP Philadelphia who was able to make

> the

> > > > > > diagnosis.

> > > > > > It is still a struggle, at age 15, but we look back, and are very

> > > glad

> > > > > the

> > > > > > diagnosis was missed early. We already used the Greenspan model

> for

> > > > > > behavior

> > > > > > modification, and used sign language also, not knowing she had

> ASD

> > or

> > > > was

> > > > > > hearing impaired. Like I said, we got lucky! I knew she had

> > behavior

> > > > > > problems for a long time, and I researched many models for

> behavior

> > > > > > management, and went to the state dept of education workshops for

> > > > years,

> > > > > to

> > > > > > get ideas. In restrospect, we did choose the right one for her,

> and

> > > we

> > > > > > insisted the school district adopt the same plan. I am still

> trying

> > > to

> > > > > get

> > > > > > sign language for all speech impaired children, because it works

> to

> > > > > lessen

> > > > > > the tantrums, if the child can effectively communicate his needs,

> > > > > thoughts,

> > > > > > fears, etc. I see a small glimmer of hope, because the new

> teachers

> > > > > coming

> > > > > > up are being taught a universal education model, that uses all

> the

> > > > > senses.

> > > > > > This has worked in Vermont for years! Finally, someone recognizes

> > > that

> > > > we

> > > > > > do

> > > > > > not all learn the same way. The statistics prove that typical

> > > children

> > > > > > actually learn faster and have higher test scores, when exposed

> to

> > > this

> > > > > > model. There is hope. Her best friend is in the gifted program at

> > our

> > > > > > school.

> > > > > >

> > > > > > On Sun, Sep 11, 2011 at 11:16 AM, <

> > > mom4dakotariley@...

> > > > > > >wrote:

> > > > > >

> > > > > > > **

> > > > > > >

> > > > > > >

> > > > > > > Welcome to the group! What you are going through sounds like

> what

> > I

> > > > > went

> > > > > > > through with my son at that age. Facial recognition has always

> > been

> > > > an

> > > > > > > issue, as well as shying away from social interaction and most

> > > > " toys " .

> > > > > > Even

> > > > > > > now that he is almost 7, we still have issues with the toys. He

> > > > prefers

> > > > > > to

> > > > > > > play with half full water bottles, and spin while holding

> > clothing.

> > > I

> > > > > do

> > > > > > > have a suggestion, that I got from a mom who had been there and

> > > done

> > > > > > that,

> > > > > > > but I will always pass along her warning. She suggested that if

> > ur

> > > > > child

> > > > > > is

> > > > > > > showing interest in hands, how about trying to communicate

> using

> > > sign

> > > > > > > language? Even if it's just one sign, it will give u time with

> > your

> > > > > > child,

> > > > > > > which you may be lacking now due to the lack of social

> > interaction,

> > > > and

> > > > > > it

> > > > > > > may stimulate your child into wanting more. This was extremely

> > > > helpful

> > > > > > for

> > > > > > > me and my son, since he was my first child and I almost needed

> > some

> > > > > > > interaction out of selfishness. After lots of tears and

> > frustrating

> > > > > > times,

> > > > > > > my son finally gave me what I had been wanting for so long: he

> > > > actually

> > > > > > > reached for my hand! I knew what he was wanting, and it wasn't

> > > really

> > > > > me,

> > > > > > > but he was wanting me to interact with him for the first time.

> > Over

> > > > > time,

> > > > > > he

> > > > > > > would look to me to sign new things to him, which satisfied his

> > > needs

> > > > > of

> > > > > > > exploring through his hands as well as my need of wanting to

> > > interact

> > > > > > with

> > > > > > > my child. Hope this helps.

> > > > > > >

> > > > > > > mom to Cody (6.5 DS/ASD) and Stormie (2.5)

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > >

> > > > > >

> > > > > >

[Guest guest]

Hi, Ariella,

I'm , and live in south NJ with my DH, our 4 children, 3 dogs and 2 cats.

We have 3 boys, all on the autism spectrum, and a daughter who is quirky and

bright, but at 5 seems more or less NT. My is 6, he has the dual dx.

His older brothers, 8 and 10, are in a therapeutic school with an Asperger's

program. They are both highly academically gifted but have mild Asperger's.

They're both doing so well in their school, and have made _real_ friendships for

the first time ever. Public school was too loud, too fast, too bright, and too

much for my boys. They went through their days in a state of sensory overload.

Changing classes, walking through busy halls, constant transitions, was just way

too much for them. Now, they're able to focus on learning academics and social

skills and organization skills.

For now, is still in the PS. I'm very happy with their lower elementary

school and even the upper elementary for special needs. I am very sad that my

8-year-old is missing out on the upper elementary, which he would've started

this year. But was falling apart in second grade, nothing they tried (and

they tried everything) was working. It was just the wrong place for him. I

have no reason to think the upper elementary would've been different.

Anyway, private schools can be really, really good.

Sent from my iPhone

> Thank you so much for this information. I did not want my daughter in a

> private segregated school. I wanted her in public school, where I thought

> she would do better, with the right supports. I am now rethinking, and

> trying to find out what would be the best environment for her. She will be

> going to High School next year, and I am so worried about that, because it

> is not a good situation, from what I see. I am open to exploring all ideas

> at this point.

>

>

>

>> **

>>

>>

>> Ariella, you are not alone. And you are not alone in the area in which you

>> live. There are several members in the Philly area!

>>

>> One of the reasons we moved to a suburb of PA was for the plethora of

>> schools. We found our s/d very non-responsive at 15 to our son's needs.

>> They gave us the option of finding a private (APS) school or using the

>> stand

>> alone Intermediate unit school nearly across the street from our home. So

>> we tried it. Started in Sept, but Oct I realized it was a mistake and by

>> January found another school and moved him. For 5 years he attended the

>> son School at Elwyn. I would have preferred the MELMARK school where

>> MAddie goes (Donna Duffy can tell you about it) but Elie did not fit in

>> there. I also explored the CAMPHILL SCHOOL for special kids, but Elie HATED

>> the atmosphere. His panic was awful to see. While the son school was

>> not much to my liking to begin with (totally segregated, 45 minutes from

>> our home, ), Elie LOVED it - from the minute he walked in the door and

>> noticed the paintings on the ceiling!! AAnd their behavior mod program

>> worked for him. He was loved and cared for there - Something I will never

>> take for granted - he was never abused or mistreated there.

>>

>>

>>

>>

>>> , you are so right.

>>> Like I said, we got lucky. It was luck that that brought us to the right

>>> solutions for the time. If we had the ASD diagnosis, my daughter would

>> have

>>> been farmed out to a " special school " for " those kids " . Her whole

>>> educational plan would have been radically different. Our school district

>>> loves to send to other schools, those children who do not easily " fit

>> in " .

>>> Only in that area is what I mean by it was better for us, looking back. I

>>> apologize for the misunderstanding I created.

>>> There are drawbacks, for sure, and there is no doubt a lot of services

>> that

>>> my daughter should have had, but I don't know what they are, or how to

>> get

>>> them. We have been on this journey of discovery alone, with our daughter

>>> for

>>> 15 years. Until very recently, I thought my daugher was the only child

>> who

>>> had both ASD and Downs.

>>> Reading the messages here has been a real eye-opener to me. I hear a lot

>> of

>>> things that we all have in common, that I never would have related, such

>> as

>>> the issues with toilet training. I always thought that was because of her

>>> intestines. Now I see that could be more cognitive, seeing how so many of

>>> our children have the same issue, for example.

>>> I know I will gain a lot from this group. For the first time, I do not

>> feel

>>> alone.

>>>

>>> On Sun, Sep 11, 2011 at 12:30 PM, Sara Cohen

>>> wrote:

>>>

>>>> **

>>>>

>>>>

>>>> We also used sign with Elie and one of the signs was LOOK AT MY

>>> MOUTH/Face>

>>>> We still use that sometimes when he is having trouble understanding -

>>> that

>>>> helps him move his focus from his own hands, toy, object on the other

>>> side

>>>> of the room, reflection - what ever!! It also is beginning (at 26yo) to

>>> see

>>>> emotions especially if we want him to know ifweare happy , sad, very

>>> quiet,

>>>> help me. HE is finally recognizing facial signals if they are BIG

>> ENOUGH.

>>>>

>>>> I must disagree with Ariella about knowing about ASD. . For us the

>>>> recognition by the s/d of his additional dx changed everything. Funny -

>>> we

>>>> were in PA too at that time. But we used the clinic at Hershey Medical

>>>> Center rather than CHOP or Dupont.

>>>>

>>>> One thing we learned at HErshey which could be emulated anyplace - and

>> I

>>>> feel, should be, is the team approach. We had a few day long visits

>> where

>>>> the Developmental ped, the educational consultant, the child psych,

>>>> hearing/OT/PT/SLP all worked together in their own disciplines to come

>> to

>>> a

>>>> consensus of what would help. The educational consultant was especially

>>>> helpful for me to take to the school, as was the OT for sensory. We

>> went

>>> to

>>>> several session with the SLP and then had a consult from her for the

>>> school

>>>> as well.

>>>>

>>>> While our son has a 30% hearing loss in low tones, bilaterally, we all

>>>> decided that was NOT a disadvantage for our son. IT helped block some

>> of

>>>> the things that were so frightening to him - loud sounds as an example.

>>>>

>>>> Oh - we also used the Greenspan approach for modification of behavior

>>>> until he reached an understanding of PRIMACK PRINCIPLES. Once he began

>> to

>>>> understand first this, then that, we started being able to reward

>>>> compliance which increased cooperation, learned waiting, etc.

>>>>

>>>>

>>>> On Sun, Sep 11, 2011 at 12:07 PM, ariella

>> wrote:

>>>>

>>>>> My heart goes out to you.

>>>>> My daughter was not diagnosed with autism until age 10. The school

>>>> district

>>>>> still does not recognize her as autistic, and for us, this is a plus!

>>> She

>>>>> would be even more isolated and segregated than she is now, if the

>> ASD

>>>> was

>>>>> added on earlier!

>>>>> Everything was explained as " typical " for Downs children, and if that

>>> did

>>>>> not fit, She " possibly had a seizure " , or, once her hearing

>> impairment

>>>> was

>>>>> recognized, it was explained as " hearing-related defiant behavior " .

>> It

>>>> was

>>>>> a

>>>>> very savvy therapist at CHOP Philadelphia who was able to make the

>>>>> diagnosis.

>>>>> It is still a struggle, at age 15, but we look back, and are very

>> glad

>>>> the

>>>>> diagnosis was missed early. We already used the Greenspan model for

>>>>> behavior

>>>>> modification, and used sign language also, not knowing she had ASD or

>>> was

>>>>> hearing impaired. Like I said, we got lucky! I knew she had behavior

>>>>> problems for a long time, and I researched many models for behavior

>>>>> management, and went to the state dept of education workshops for

>>> years,

>>>> to

>>>>> get ideas. In restrospect, we did choose the right one for her, and

>> we

>>>>> insisted the school district adopt the same plan. I am still trying

>> to

>>>> get

>>>>> sign language for all speech impaired children, because it works to

>>>> lessen

>>>>> the tantrums, if the child can effectively communicate his needs,

>>>> thoughts,

>>>>> fears, etc. I see a small glimmer of hope, because the new teachers

>>>> coming

>>>>> up are being taught a universal education model, that uses all the

>>>> senses.

>>>>> This has worked in Vermont for years! Finally, someone recognizes

>> that

>>> we

>>>>> do

>>>>> not all learn the same way. The statistics prove that typical

>> children

>>>>> actually learn faster and have higher test scores, when exposed to

>> this

>>>>> model. There is hope. Her best friend is in the gifted program at our

>>>>> school.

>>>>>

>>>>> On Sun, Sep 11, 2011 at 11:16 AM, <

>> mom4dakotariley@...

>>>>>> wrote:

>>>>>

>>>>>> **

>>>>>>

>>>>>>

>>>>>> Welcome to the group! What you are going through sounds like what I

>>>> went

>>>>>> through with my son at that age. Facial recognition has always been

>>> an

>>>>>> issue, as well as shying away from social interaction and most

>>> " toys " .

>>>>> Even

>>>>>> now that he is almost 7, we still have issues with the toys. He

>>> prefers

>>>>> to

>>>>>> play with half full water bottles, and spin while holding clothing.

>> I

>>>> do

>>>>>> have a suggestion, that I got from a mom who had been there and

>> done

>>>>> that,

>>>>>> but I will always pass along her warning. She suggested that if ur

>>>> child

>>>>> is

>>>>>> showing interest in hands, how about trying to communicate using

>> sign

>>>>>> language? Even if it's just one sign, it will give u time with your

>>>>> child,

>>>>>> which you may be lacking now due to the lack of social interaction,

>>> and

>>>>> it

>>>>>> may stimulate your child into wanting more. This was extremely

>>> helpful

>>>>> for

>>>>>> me and my son, since he was my first child and I almost needed some

>>>>>> interaction out of selfishness. After lots of tears and frustrating

>>>>> times,

>>>>>> my son finally gave me what I had been wanting for so long: he

>>> actually

>>>>>> reached for my hand! I knew what he was wanting, and it wasn't

>> really

>>>> me,

>>>>>> but he was wanting me to interact with him for the first time. Over

>>>> time,

>>>>> he

>>>>>> would look to me to sign new things to him, which satisfied his

>> needs

>>>> of

>>>>>> exploring through his hands as well as my need of wanting to

>> interact

>>>>> with

>>>>>> my child. Hope this helps.

>>>>>>

>>>>>> mom to Cody (6.5 DS/ASD) and Stormie (2.5)

>>>>>>

>>>>>>

>>>>>>

>>>>>

>>>>>

>>>>>

[Guest guest]

So CAMPHILL at Beaver Run is possible for you: www.*camphills*

pecialschool.org/

Also son School at Elwyn: www.*elwyn*.org/program/approved_private_

*school*

and Melmark.: - www.*melmark*.org/

I tried School: www.*timothyschool*.com since it sells itself

as being for kids with Autsm or PDD. , but they are looking for kids who

have much higher functioning ability then Elie had.

There may be others that I didn't find!!! I didn't look for any schools

that were religious. I did go to the state list for APS.

> I live in South Eastern Montgomery County, PA., just outside of

> Philadelphia.

> Thank you so much for your help.

>

>

> > **

> >

> >

> > What community do you live in. - can give you a better idea of schools,

> > checked out or some directions.

> >

> >

> >

> >

> > > Thank you so much for this information. I did not want my daughter in a

> > > private segregated school. I wanted her in public school, where I

> thought

> > > she would do better, with the right supports. I am now rethinking, and

> > > trying to find out what would be the best environment for her. She will

> > be

> > > going to High School next year, and I am so worried about that, because

> > it

> > > is not a good situation, from what I see. I am open to exploring all

> > ideas

> > > at this point.

> > >

> > > On Sun, Sep 11, 2011 at 1:00 PM, Sara Cohen

> > wrote:

> > >

> > > > **

> > > >

> > > >

> > > > Ariella, you are not alone. And you are not alone in the area in

> which

> > > you

> > > > live. There are several members in the Philly area!

> > > >

> > > > One of the reasons we moved to a suburb of PA was for the plethora of

> > > > schools. We found our s/d very non-responsive at 15 to our son's

> needs.

> > > > They gave us the option of finding a private (APS) school or using

> the

> > > > stand

> > > > alone Intermediate unit school nearly across the street from our

> home.

> > So

> > > > we tried it. Started in Sept, but Oct I realized it was a mistake and

> > by

> > > > January found another school and moved him. For 5 years he attended

> the

> > > > son School at Elwyn. I would have preferred the MELMARK school

> > where

> > > > MAddie goes (Donna Duffy can tell you about it) but Elie did not fit

> in

> > > > there. I also explored the CAMPHILL SCHOOL for special kids, but Elie

> > > HATED

> > > > the atmosphere. His panic was awful to see. While the son school

> > was

> > > > not much to my liking to begin with (totally segregated, 45 minutes

> > from

> > > > our home, ), Elie LOVED it - from the minute he walked in the door

> and

> > > > noticed the paintings on the ceiling!! AAnd their behavior mod

> program

> > > > worked for him. He was loved and cared for there - Something I will

> > never

> > > > take for granted - he was never abused or mistreated there.

> > > >

> > > >

> > > > On Sun, Sep 11, 2011 at 12:51 PM, ariella

> > wrote:

> > > >

> > > > > , you are so right.

> > > > > Like I said, we got lucky. It was luck that that brought us to the

> > > right

> > > > > solutions for the time. If we had the ASD diagnosis, my daughter

> > would

> > > > have

> > > > > been farmed out to a " special school " for " those kids " . Her whole

> > > > > educational plan would have been radically different. Our school

> > > district

> > > > > loves to send to other schools, those children who do not easily

> " fit

> > > > in " .

> > > > > Only in that area is what I mean by it was better for us, looking

> > back.

> > > I

> > > > > apologize for the misunderstanding I created.

> > > > > There are drawbacks, for sure, and there is no doubt a lot of

> > services

> > > > that

> > > > > my daughter should have had, but I don't know what they are, or how

> > to

> > > > get

> > > > > them. We have been on this journey of discovery alone, with our

> > > daughter

> > > > > for

> > > > > 15 years. Until very recently, I thought my daugher was the only

> > child

> > > > who

> > > > > had both ASD and Downs.

> > > > > Reading the messages here has been a real eye-opener to me. I hear

> a

> > > lot

> > > > of

> > > > > things that we all have in common, that I never would have related,

> > > such

> > > > as

> > > > > the issues with toilet training. I always thought that was because

> of

> > > her

> > > > > intestines. Now I see that could be more cognitive, seeing how so

> > many

> > > of

> > > > > our children have the same issue, for example.

> > > > > I know I will gain a lot from this group. For the first time, I do

> > not

> > > > feel

> > > > > alone.

> > > > >

> > > > > On Sun, Sep 11, 2011 at 12:30 PM, Sara Cohen <

> pastmidvale@...>

> > > > > wrote:

> > > > >

> > > > > > **

> > > > > >

> > > > > >

> > > > > > We also used sign with Elie and one of the signs was LOOK AT MY

> > > > > MOUTH/Face>

> > > > > > We still use that sometimes when he is having trouble

> understanding

> > -

> > > > > that

> > > > > > helps him move his focus from his own hands, toy, object on the

> > other

> > > > > side

> > > > > > of the room, reflection - what ever!! It also is beginning (at

> > 26yo)

> > > to

> > > > > see

> > > > > > emotions especially if we want him to know ifweare happy , sad,

> > very

> > > > > quiet,

> > > > > > help me. HE is finally recognizing facial signals if they are BIG

> > > > ENOUGH.

> > > > > >

> > > > > > I must disagree with Ariella about knowing about ASD. . For us

> the

> > > > > > recognition by the s/d of his additional dx changed everything.

> > Funny

> > > -

> > > > > we

> > > > > > were in PA too at that time. But we used the clinic at Hershey

> > > Medical

> > > > > > Center rather than CHOP or Dupont.

> > > > > >

> > > > > > One thing we learned at HErshey which could be emulated anyplace

> -

> > > and

> > > > I

> > > > > > feel, should be, is the team approach. We had a few day long

> visits

> > > > where

> > > > > > the Developmental ped, the educational consultant, the child

> psych,

> > > > > > hearing/OT/PT/SLP all worked together in their own disciplines to

> > > come

> > > > to

> > > > > a

> > > > > > consensus of what would help. The educational consultant was

> > > especially

> > > > > > helpful for me to take to the school, as was the OT for sensory.

> We

> > > > went

> > > > > to

> > > > > > several session with the SLP and then had a consult from her for

> > the

> > > > > school

> > > > > > as well.

> > > > > >

> > > > > > While our son has a 30% hearing loss in low tones, bilaterally,

> we

> > > all

> > > > > > decided that was NOT a disadvantage for our son. IT helped block

> > some

> > > > of

> > > > > > the things that were so frightening to him - loud sounds as an

> > > example.

> > > > > >

> > > > > > Oh - we also used the Greenspan approach for modification of

> > behavior

> > > > > > until he reached an understanding of PRIMACK PRINCIPLES. Once he

> > > began

> > > > to

> > > > > > understand first this, then that, we started being able to reward

> > > > > > compliance which increased cooperation, learned waiting, etc.

> > > > > >

> > > > > >

> > > > > > On Sun, Sep 11, 2011 at 12:07 PM, ariella

> > > > wrote:

> > > > > >

> > > > > > > My heart goes out to you.

> > > > > > > My daughter was not diagnosed with autism until age 10. The

> > school

> > > > > > district

> > > > > > > still does not recognize her as autistic, and for us, this is a

> > > plus!

> > > > > She

> > > > > > > would be even more isolated and segregated than she is now, if

> > the

> > > > ASD

> > > > > > was

> > > > > > > added on earlier!

> > > > > > > Everything was explained as " typical " for Downs children, and

> if

> > > that

> > > > > did

> > > > > > > not fit, She " possibly had a seizure " , or, once her hearing

> > > > impairment

> > > > > > was

> > > > > > > recognized, it was explained as " hearing-related defiant

> > behavior " .

> > > > It

> > > > > > was

> > > > > > > a

> > > > > > > very savvy therapist at CHOP Philadelphia who was able to make

> > the

> > > > > > > diagnosis.

> > > > > > > It is still a struggle, at age 15, but we look back, and are

> very

> > > > glad

> > > > > > the

> > > > > > > diagnosis was missed early. We already used the Greenspan model

> > for

> > > > > > > behavior

> > > > > > > modification, and used sign language also, not knowing she had

> > ASD

> > > or

> > > > > was

> > > > > > > hearing impaired. Like I said, we got lucky! I knew she had

> > > behavior

> > > > > > > problems for a long time, and I researched many models for

> > behavior

> > > > > > > management, and went to the state dept of education workshops

> for

> > > > > years,

> > > > > > to

> > > > > > > get ideas. In restrospect, we did choose the right one for her,

> > and

> > > > we

> > > > > > > insisted the school district adopt the same plan. I am still

> > trying

> > > > to

> > > > > > get

> > > > > > > sign language for all speech impaired children, because it

> works

> > to

> > > > > > lessen

> > > > > > > the tantrums, if the child can effectively communicate his

> needs,

> > > > > > thoughts,

> > > > > > > fears, etc. I see a small glimmer of hope, because the new

> > teachers

> > > > > > coming

> > > > > > > up are being taught a universal education model, that uses all

> > the

> > > > > > senses.

> > > > > > > This has worked in Vermont for years! Finally, someone

> recognizes

> > > > that

> > > > > we

> > > > > > > do

> > > > > > > not all learn the same way. The statistics prove that typical

> > > > children

> > > > > > > actually learn faster and have higher test scores, when exposed

> > to

> > > > this

> > > > > > > model. There is hope. Her best friend is in the gifted program

> at

> > > our

> > > > > > > school.

> > > > > > >

> > > > > > > On Sun, Sep 11, 2011 at 11:16 AM, <

> > > > mom4dakotariley@...

> > > > > > > >wrote:

> > > > > > >

> > > > > > > > **

> > > > > > > >

> > > > > > > >

> > > > > > > > Welcome to the group! What you are going through sounds like

> > what

> > > I

> > > > > > went

> > > > > > > > through with my son at that age. Facial recognition has

> always

> > > been

> > > > > an

> > > > > > > > issue, as well as shying away from social interaction and

> most

> > > > > " toys " .

> > > > > > > Even

> > > > > > > > now that he is almost 7, we still have issues with the toys.

> He

> > > > > prefers

> > > > > > > to

> > > > > > > > play with half full water bottles, and spin while holding

> > > clothing.

> > > > I

> > > > > > do

> > > > > > > > have a suggestion, that I got from a mom who had been there

> and

> > > > done

> > > > > > > that,

> > > > > > > > but I will always pass along her warning. She suggested that

> if

> > > ur

> > > > > > child

> > > > > > > is

> > > > > > > > showing interest in hands, how about trying to communicate

> > using

> > > > sign

> > > > > > > > language? Even if it's just one sign, it will give u time

> with

> > > your

> > > > > > > child,

> > > > > > > > which you may be lacking now due to the lack of social

> > > interaction,

> > > > > and

> > > > > > > it

> > > > > > > > may stimulate your child into wanting more. This was

> extremely

> > > > > helpful

> > > > > > > for

> > > > > > > > me and my son, since he was my first child and I almost

> needed

> > > some

> > > > > > > > interaction out of selfishness. After lots of tears and

> > > frustrating

> > > > > > > times,

> > > > > > > > my son finally gave me what I had been wanting for so long:

> he

> > > > > actually

> > > > > > > > reached for my hand! I knew what he was wanting, and it

> wasn't

> > > > really

> > > > > > me,

> > > > > > > > but he was wanting me to interact with him for the first

> time.

> > > Over

> > > > > > time,

> > > > > > > he

> > > > > > > > would look to me to sign new things to him, which satisfied

> his

> > > > needs

> > > > > > of

> > > > > > > > exploring through his hands as well as my need of wanting to

> > > > interact

> > > > > > > with

> > > > > > > > my child. Hope this helps.

> > > > > > > >

> > > > > > > > mom to Cody (6.5 DS/ASD) and Stormie (2.5)

> > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > > >

> > > > > > >

[Guest guest]

I'm learning from you and the group that there is not one program that will

work for everyone. I just have to find the right one for my daughter. Thank

you so much. I can only imagine what it would be like to have more than one

child with ASD. (I have 3 with ADHD, but that is not so hard to deal with.

). Do all of the schools you mention take children in diapers? That was my

biggest issue with ESY programs at first. No one wants an older child who is

indiapers that I have found around here. Then, when the hear the dual

diagnosis, they let you know that your child would not be a " good candidate "

for this program, etc.

> **

>

>

> Hi, Ariella,

>

> I'm , and live in south NJ with my DH, our 4 children, 3 dogs and 2

> cats. We have 3 boys, all on the autism spectrum, and a daughter who is

> quirky and bright, but at 5 seems more or less NT. My is 6, he has

> the dual dx. His older brothers, 8 and 10, are in a therapeutic school with

> an Asperger's program. They are both highly academically gifted but have

> mild Asperger's. They're both doing so well in their school, and have made

> _real_ friendships for the first time ever. Public school was too loud, too

> fast, too bright, and too much for my boys. They went through their days in

> a state of sensory overload. Changing classes, walking through busy halls,

> constant transitions, was just way too much for them. Now, they're able to

> focus on learning academics and social skills and organization skills.

>

> For now, is still in the PS. I'm very happy with their lower

> elementary school and even the upper elementary for special needs. I am very

> sad that my 8-year-old is missing out on the upper elementary, which he

> would've started this year. But was falling apart in second grade,

> nothing they tried (and they tried everything) was working. It was just the

> wrong place for him. I have no reason to think the upper elementary would've

> been different.

> Anyway, private schools can be really, really good.

>

>

>

>

> Sent from my iPhone

>

>

>

> > Thank you so much for this information. I did not want my daughter in a

> > private segregated school. I wanted her in public school, where I thought

> > she would do better, with the right supports. I am now rethinking, and

> > trying to find out what would be the best environment for her. She will

> be

> > going to High School next year, and I am so worried about that, because

> it

> > is not a good situation, from what I see. I am open to exploring all

> ideas

> > at this point.

> >

> > On Sun, Sep 11, 2011 at 1:00 PM, Sara Cohen

> wrote:

> >

> >> **

> >>

> >>

> >> Ariella, you are not alone. And you are not alone in the area in which

> you

> >> live. There are several members in the Philly area!

> >>

> >> One of the reasons we moved to a suburb of PA was for the plethora of

> >> schools. We found our s/d very non-responsive at 15 to our son's needs.

> >> They gave us the option of finding a private (APS) school or using the

> >> stand

> >> alone Intermediate unit school nearly across the street from our home.

> So

> >> we tried it. Started in Sept, but Oct I realized it was a mistake and by

> >> January found another school and moved him. For 5 years he attended the

> >> son School at Elwyn. I would have preferred the MELMARK school

> where

> >> MAddie goes (Donna Duffy can tell you about it) but Elie did not fit in

> >> there. I also explored the CAMPHILL SCHOOL for special kids, but Elie

> HATED

> >> the atmosphere. His panic was awful to see. While the son school

> was

> >> not much to my liking to begin with (totally segregated, 45 minutes from

> >> our home, ), Elie LOVED it - from the minute he walked in the door and

> >> noticed the paintings on the ceiling!! AAnd their behavior mod program

> >> worked for him. He was loved and cared for there - Something I will

> never

> >> take for granted - he was never abused or mistreated there.

> >>

> >>

> >>

> >>

> >>> , you are so right.

> >>> Like I said, we got lucky. It was luck that that brought us to the

> right

> >>> solutions for the time. If we had the ASD diagnosis, my daughter would

> >> have

> >>> been farmed out to a " special school " for " those kids " . Her whole

> >>> educational plan would have been radically different. Our school

> district

> >>> loves to send to other schools, those children who do not easily " fit

> >> in " .

> >>> Only in that area is what I mean by it was better for us, looking back.

> I

> >>> apologize for the misunderstanding I created.

> >>> There are drawbacks, for sure, and there is no doubt a lot of services

> >> that

> >>> my daughter should have had, but I don't know what they are, or how to

> >> get

> >>> them. We have been on this journey of discovery alone, with our

> daughter

> >>> for

> >>> 15 years. Until very recently, I thought my daugher was the only child

> >> who

> >>> had both ASD and Downs.

> >>> Reading the messages here has been a real eye-opener to me. I hear a

> lot

> >> of

> >>> things that we all have in common, that I never would have related,

> such

> >> as

> >>> the issues with toilet training. I always thought that was because of

> her

> >>> intestines. Now I see that could be more cognitive, seeing how so many

> of

> >>> our children have the same issue, for example.

> >>> I know I will gain a lot from this group. For the first time, I do not

> >> feel

> >>> alone.

> >>>

> >>> On Sun, Sep 11, 2011 at 12:30 PM, Sara Cohen

> >>> wrote:

> >>>

> >>>> **

> >>>>

> >>>>

> >>>> We also used sign with Elie and one of the signs was LOOK AT MY

> >>> MOUTH/Face>

> >>>> We still use that sometimes when he is having trouble understanding -

> >>> that

> >>>> helps him move his focus from his own hands, toy, object on the other

> >>> side

> >>>> of the room, reflection - what ever!! It also is beginning (at 26yo)

> to

> >>> see

> >>>> emotions especially if we want him to know ifweare happy , sad, very

> >>> quiet,

> >>>> help me. HE is finally recognizing facial signals if they are BIG

> >> ENOUGH.

> >>>>

> >>>> I must disagree with Ariella about knowing about ASD. . For us the

> >>>> recognition by the s/d of his additional dx changed everything. Funny

> -

> >>> we

> >>>> were in PA too at that time. But we used the clinic at Hershey Medical

> >>>> Center rather than CHOP or Dupont.

> >>>>

> >>>> One thing we learned at HErshey which could be emulated anyplace - and

> >> I

> >>>> feel, should be, is the team approach. We had a few day long visits

> >> where

> >>>> the Developmental ped, the educational consultant, the child psych,

> >>>> hearing/OT/PT/SLP all worked together in their own disciplines to come

> >> to

> >>> a

> >>>> consensus of what would help. The educational consultant was

> especially

> >>>> helpful for me to take to the school, as was the OT for sensory. We

> >> went

> >>> to

> >>>> several session with the SLP and then had a consult from her for the

> >>> school

> >>>> as well.

> >>>>

> >>>> While our son has a 30% hearing loss in low tones, bilaterally, we all

> >>>> decided that was NOT a disadvantage for our son. IT helped block some

> >> of

> >>>> the things that were so frightening to him - loud sounds as an

> example.

> >>>>

> >>>> Oh - we also used the Greenspan approach for modification of behavior

> >>>> until he reached an understanding of PRIMACK PRINCIPLES. Once he began

> >> to

> >>>> understand first this, then that, we started being able to reward

> >>>> compliance which increased cooperation, learned waiting, etc.

> >>>>

> >>>>

> >>>> On Sun, Sep 11, 2011 at 12:07 PM, ariella

> >> wrote:

> >>>>

> >>>>> My heart goes out to you.

> >>>>> My daughter was not diagnosed with autism until age 10. The school

> >>>> district

> >>>>> still does not recognize her as autistic, and for us, this is a plus!

> >>> She

> >>>>> would be even more isolated and segregated than she is now, if the

> >> ASD

> >>>> was

> >>>>> added on earlier!

> >>>>> Everything was explained as " typical " for Downs children, and if that

> >>> did

> >>>>> not fit, She " possibly had a seizure " , or, once her hearing

> >> impairment

> >>>> was

> >>>>> recognized, it was explained as " hearing-related defiant behavior " .

> >> It

> >>>> was

> >>>>> a

> >>>>> very savvy therapist at CHOP Philadelphia who was able to make the

> >>>>> diagnosis.

> >>>>> It is still a struggle, at age 15, but we look back, and are very

> >> glad

> >>>> the

> >>>>> diagnosis was missed early. We already used the Greenspan model for

> >>>>> behavior

> >>>>> modification, and used sign language also, not knowing she had ASD or

> >>> was

> >>>>> hearing impaired. Like I said, we got lucky! I knew she had behavior

> >>>>> problems for a long time, and I researched many models for behavior

> >>>>> management, and went to the state dept of education workshops for

> >>> years,

> >>>> to

> >>>>> get ideas. In restrospect, we did choose the right one for her, and

> >> we

> >>>>> insisted the school district adopt the same plan. I am still trying

> >> to

> >>>> get

> >>>>> sign language for all speech impaired children, because it works to

> >>>> lessen

> >>>>> the tantrums, if the child can effectively communicate his needs,

> >>>> thoughts,

> >>>>> fears, etc. I see a small glimmer of hope, because the new teachers

> >>>> coming

> >>>>> up are being taught a universal education model, that uses all the

> >>>> senses.

> >>>>> This has worked in Vermont for years! Finally, someone recognizes

> >> that

> >>> we

> >>>>> do

> >>>>> not all learn the same way. The statistics prove that typical

> >> children

> >>>>> actually learn faster and have higher test scores, when exposed to

> >> this

> >>>>> model. There is hope. Her best friend is in the gifted program at our

> >>>>> school.

> >>>>>

> >>>>> On Sun, Sep 11, 2011 at 11:16 AM, <

> >> mom4dakotariley@...

> >>>>>> wrote:

> >>>>>

> >>>>>> **

> >>>>>>

> >>>>>>

> >>>>>> Welcome to the group! What you are going through sounds like what I

> >>>> went

> >>>>>> through with my son at that age. Facial recognition has always been

> >>> an

> >>>>>> issue, as well as shying away from social interaction and most

> >>> " toys " .

> >>>>> Even

> >>>>>> now that he is almost 7, we still have issues with the toys. He

> >>> prefers

> >>>>> to

> >>>>>> play with half full water bottles, and spin while holding clothing.

> >> I

> >>>> do

> >>>>>> have a suggestion, that I got from a mom who had been there and

> >> done

> >>>>> that,

> >>>>>> but I will always pass along her warning. She suggested that if ur

> >>>> child

> >>>>> is

> >>>>>> showing interest in hands, how about trying to communicate using

> >> sign

> >>>>>> language? Even if it's just one sign, it will give u time with your

> >>>>> child,

> >>>>>> which you may be lacking now due to the lack of social interaction,

> >>> and

> >>>>> it

> >>>>>> may stimulate your child into wanting more. This was extremely

> >>> helpful

> >>>>> for

> >>>>>> me and my son, since he was my first child and I almost needed some

> >>>>>> interaction out of selfishness. After lots of tears and frustrating

> >>>>> times,

> >>>>>> my son finally gave me what I had been wanting for so long: he

> >>> actually

> >>>>>> reached for my hand! I knew what he was wanting, and it wasn't

> >> really

> >>>> me,

> >>>>>> but he was wanting me to interact with him for the first time. Over

> >>>> time,

> >>>>> he

> >>>>>> would look to me to sign new things to him, which satisfied his

> >> needs

> >>>> of

> >>>>>> exploring through his hands as well as my need of wanting to

> >> interact

> >>>>> with

> >>>>>> my child. Hope this helps.

> >>>>>>

> >>>>>> mom to Cody (6.5 DS/ASD) and Stormie (2.5)

> >>>>>>

> >>>>>>

> >>>>>>

> >>>>>

> >>>>>

> >>>>>

[Guest guest]

Camphill, son and Melmark never mentioned this as an issue. Elie was

not in diapers, but he was not toilet trained as yet - he attained that

with the help of son staff. I took him out of diapers at age 6. But

we needed lots of changes of clothes!! :`)

> I'm learning from you and the group that there is not one program that will

> work for everyone. I just have to find the right one for my daughter. Thank

> you so much. I can only imagine what it would be like to have more than one

> child with ASD. (I have 3 with ADHD, but that is not so hard to deal with.

> ). Do all of the schools you mention take children in diapers? That was my

> biggest issue with ESY programs at first. No one wants an older child who

> is

> indiapers that I have found around here. Then, when the hear the dual

> diagnosis, they let you know that your child would not be a " good

> candidate "

> for this program, etc.

>

>

>

>

> > **

> >

> >

> > Hi, Ariella,

> >

> > I'm , and live in south NJ with my DH, our 4 children, 3 dogs and 2

> > cats. We have 3 boys, all on the autism spectrum, and a daughter who is

> > quirky and bright, but at 5 seems more or less NT. My is 6, he has

> > the dual dx. His older brothers, 8 and 10, are in a therapeutic school

> with

> > an Asperger's program. They are both highly academically gifted but have

> > mild Asperger's. They're both doing so well in their school, and have

> made

> > _real_ friendships for the first time ever. Public school was too loud,

> too

> > fast, too bright, and too much for my boys. They went through their days

> in

> > a state of sensory overload. Changing classes, walking through busy

> halls,

> > constant transitions, was just way too much for them. Now, they're able

> to

> > focus on learning academics and social skills and organization skills.

> >

> > For now, is still in the PS. I'm very happy with their lower

> > elementary school and even the upper elementary for special needs. I am

> very

> > sad that my 8-year-old is missing out on the upper elementary, which he

> > would've started this year. But was falling apart in second grade,

> > nothing they tried (and they tried everything) was working. It was just

> the

> > wrong place for him. I have no reason to think the upper elementary

> would've

> > been different.

> > Anyway, private schools can be really, really good.

> >

> >

> >

> >

> > Sent from my iPhone

> >

> >

> >

> > > Thank you so much for this information. I did not want my daughter in a

> > > private segregated school. I wanted her in public school, where I

> thought

> > > she would do better, with the right supports. I am now rethinking, and

> > > trying to find out what would be the best environment for her. She will

> > be

> > > going to High School next year, and I am so worried about that, because

> > it

> > > is not a good situation, from what I see. I am open to exploring all

> > ideas

> > > at this point.

> > >

> > > On Sun, Sep 11, 2011 at 1:00 PM, Sara Cohen

> > wrote:

> > >

> > >> **

> > >>

> > >>

> > >> Ariella, you are not alone. And you are not alone in the area in which

> > you

> > >> live. There are several members in the Philly area!

> > >>

> > >> One of the reasons we moved to a suburb of PA was for the plethora of

> > >> schools. We found our s/d very non-responsive at 15 to our son's

> needs.

> > >> They gave us the option of finding a private (APS) school or using the

> > >> stand

> > >> alone Intermediate unit school nearly across the street from our home.

> > So

> > >> we tried it. Started in Sept, but Oct I realized it was a mistake and

> by

> > >> January found another school and moved him. For 5 years he attended

> the

> > >> son School at Elwyn. I would have preferred the MELMARK school

> > where

> > >> MAddie goes (Donna Duffy can tell you about it) but Elie did not fit

> in

> > >> there. I also explored the CAMPHILL SCHOOL for special kids, but Elie

> > HATED

> > >> the atmosphere. His panic was awful to see. While the son school

> > was

> > >> not much to my liking to begin with (totally segregated, 45 minutes

> from

> > >> our home, ), Elie LOVED it - from the minute he walked in the door and

> > >> noticed the paintings on the ceiling!! AAnd their behavior mod program

> > >> worked for him. He was loved and cared for there - Something I will

> > never

> > >> take for granted - he was never abused or mistreated there.

> > >>

> > >>

> > >> On Sun, Sep 11, 2011 at 12:51 PM, ariella

> wrote:

> > >>

> > >>> , you are so right.

> > >>> Like I said, we got lucky. It was luck that that brought us to the

> > right

> > >>> solutions for the time. If we had the ASD diagnosis, my daughter

> would

> > >> have

> > >>> been farmed out to a " special school " for " those kids " . Her whole

> > >>> educational plan would have been radically different. Our school

> > district

> > >>> loves to send to other schools, those children who do not easily " fit

> > >> in " .

> > >>> Only in that area is what I mean by it was better for us, looking

> back.

> > I

> > >>> apologize for the misunderstanding I created.

> > >>> There are drawbacks, for sure, and there is no doubt a lot of

> services

> > >> that

> > >>> my daughter should have had, but I don't know what they are, or how

> to

> > >> get

> > >>> them. We have been on this journey of discovery alone, with our

> > daughter

> > >>> for

> > >>> 15 years. Until very recently, I thought my daugher was the only

> child

> > >> who

> > >>> had both ASD and Downs.

> > >>> Reading the messages here has been a real eye-opener to me. I hear a

> > lot

> > >> of

> > >>> things that we all have in common, that I never would have related,

> > such

> > >> as

> > >>> the issues with toilet training. I always thought that was because of

> > her

> > >>> intestines. Now I see that could be more cognitive, seeing how so

> many

> > of

> > >>> our children have the same issue, for example.

> > >>> I know I will gain a lot from this group. For the first time, I do

> not

> > >> feel

> > >>> alone.

> > >>>

> > >>> On Sun, Sep 11, 2011 at 12:30 PM, Sara Cohen

> > >>> wrote:

> > >>>

> > >>>> **

> > >>>>

> > >>>>

> > >>>> We also used sign with Elie and one of the signs was LOOK AT MY

> > >>> MOUTH/Face>

> > >>>> We still use that sometimes when he is having trouble understanding

> -

> > >>> that

> > >>>> helps him move his focus from his own hands, toy, object on the

> other

> > >>> side

> > >>>> of the room, reflection - what ever!! It also is beginning (at 26yo)

> > to

> > >>> see

> > >>>> emotions especially if we want him to know ifweare happy , sad, very

> > >>> quiet,

> > >>>> help me. HE is finally recognizing facial signals if they are BIG

> > >> ENOUGH.

> > >>>>

> > >>>> I must disagree with Ariella about knowing about ASD. . For us the

> > >>>> recognition by the s/d of his additional dx changed everything.

> Funny

> > -

> > >>> we

> > >>>> were in PA too at that time. But we used the clinic at Hershey

> Medical

> > >>>> Center rather than CHOP or Dupont.

> > >>>>

> > >>>> One thing we learned at HErshey which could be emulated anyplace -

> and

> > >> I

> > >>>> feel, should be, is the team approach. We had a few day long visits

> > >> where

> > >>>> the Developmental ped, the educational consultant, the child psych,

> > >>>> hearing/OT/PT/SLP all worked together in their own disciplines to

> come

> > >> to

> > >>> a

> > >>>> consensus of what would help. The educational consultant was

> > especially

> > >>>> helpful for me to take to the school, as was the OT for sensory. We

> > >> went

> > >>> to

> > >>>> several session with the SLP and then had a consult from her for the

> > >>> school

> > >>>> as well.

> > >>>>

> > >>>> While our son has a 30% hearing loss in low tones, bilaterally, we

> all

> > >>>> decided that was NOT a disadvantage for our son. IT helped block

> some

> > >> of

> > >>>> the things that were so frightening to him - loud sounds as an

> > example.

> > >>>>

> > >>>> Oh - we also used the Greenspan approach for modification of

> behavior

> > >>>> until he reached an understanding of PRIMACK PRINCIPLES. Once he

> began

> > >> to

> > >>>> understand first this, then that, we started being able to reward

> > >>>> compliance which increased cooperation, learned waiting, etc.

> > >>>>

> > >>>>

> > >>>> On Sun, Sep 11, 2011 at 12:07 PM, ariella

> > >> wrote:

> > >>>>

> > >>>>> My heart goes out to you.

> > >>>>> My daughter was not diagnosed with autism until age 10. The school

> > >>>> district

> > >>>>> still does not recognize her as autistic, and for us, this is a

> plus!

> > >>> She

> > >>>>> would be even more isolated and segregated than she is now, if the

> > >> ASD

> > >>>> was

> > >>>>> added on earlier!

> > >>>>> Everything was explained as " typical " for Downs children, and if

> that

> > >>> did

> > >>>>> not fit, She " possibly had a seizure " , or, once her hearing

> > >> impairment

> > >>>> was

> > >>>>> recognized, it was explained as " hearing-related defiant behavior " .

> > >> It

> > >>>> was

> > >>>>> a

> > >>>>> very savvy therapist at CHOP Philadelphia who was able to make the

> > >>>>> diagnosis.

> > >>>>> It is still a struggle, at age 15, but we look back, and are very

> > >> glad

> > >>>> the

> > >>>>> diagnosis was missed early. We already used the Greenspan model for

> > >>>>> behavior

> > >>>>> modification, and used sign language also, not knowing she had ASD

> or

> > >>> was

> > >>>>> hearing impaired. Like I said, we got lucky! I knew she had

> behavior

> > >>>>> problems for a long time, and I researched many models for behavior

> > >>>>> management, and went to the state dept of education workshops for

> > >>> years,

> > >>>> to

> > >>>>> get ideas. In restrospect, we did choose the right one for her, and

> > >> we

> > >>>>> insisted the school district adopt the same plan. I am still trying

> > >> to

> > >>>> get

> > >>>>> sign language for all speech impaired children, because it works to

> > >>>> lessen

> > >>>>> the tantrums, if the child can effectively communicate his needs,

> > >>>> thoughts,

> > >>>>> fears, etc. I see a small glimmer of hope, because the new teachers

> > >>>> coming

> > >>>>> up are being taught a universal education model, that uses all the

> > >>>> senses.

> > >>>>> This has worked in Vermont for years! Finally, someone recognizes

> > >> that

> > >>> we

> > >>>>> do

> > >>>>> not all learn the same way. The statistics prove that typical

> > >> children

> > >>>>> actually learn faster and have higher test scores, when exposed to

> > >> this

> > >>>>> model. There is hope. Her best friend is in the gifted program at

> our

> > >>>>> school.

> > >>>>>

> > >>>>> On Sun, Sep 11, 2011 at 11:16 AM, <

> > >> mom4dakotariley@...

> > >>>>>> wrote:

> > >>>>>

> > >>>>>> **

> > >>>>>>

> > >>>>>>

> > >>>>>> Welcome to the group! What you are going through sounds like what

> I

> > >>>> went

> > >>>>>> through with my son at that age. Facial recognition has always

> been

> > >>> an

> > >>>>>> issue, as well as shying away from social interaction and most

> > >>> " toys " .

> > >>>>> Even

> > >>>>>> now that he is almost 7, we still have issues with the toys. He

> > >>> prefers

> > >>>>> to

> > >>>>>> play with half full water bottles, and spin while holding

> clothing.

> > >> I

> > >>>> do

> > >>>>>> have a suggestion, that I got from a mom who had been there and

> > >> done

> > >>>>> that,

> > >>>>>> but I will always pass along her warning. She suggested that if ur

> > >>>> child

> > >>>>> is

> > >>>>>> showing interest in hands, how about trying to communicate using

> > >> sign

> > >>>>>> language? Even if it's just one sign, it will give u time with

> your

> > >>>>> child,

> > >>>>>> which you may be lacking now due to the lack of social

> interaction,

> > >>> and

> > >>>>> it

> > >>>>>> may stimulate your child into wanting more. This was extremely

> > >>> helpful

> > >>>>> for

> > >>>>>> me and my son, since he was my first child and I almost needed

> some

> > >>>>>> interaction out of selfishness. After lots of tears and

> frustrating

> > >>>>> times,

> > >>>>>> my son finally gave me what I had been wanting for so long: he

> > >>> actually

> > >>>>>> reached for my hand! I knew what he was wanting, and it wasn't

> > >> really

> > >>>> me,

> > >>>>>> but he was wanting me to interact with him for the first time.

> Over

> > >>>> time,

> > >>>>> he

> > >>>>>> would look to me to sign new things to him, which satisfied his

> > >> needs

> > >>>> of

> > >>>>>> exploring through his hands as well as my need of wanting to

> > >> interact

> > >>>>> with

> > >>>>>> my child. Hope this helps.

> > >>>>>>

> > >>>>>> mom to Cody (6.5 DS/ASD) and Stormie (2.5)

> > >>>>>>

> > >>>>>>

> > >>>>>>

> > >>>>>

> > >>>>>

> > >>>>>

[Guest guest]

Thank you so much.

> **

>

>

> So CAMPHILL at Beaver Run is possible for you: www.*camphills*

> pecialschool.org/

>

> Also son School at Elwyn: www.*elwyn*.org/program/approved_private_

> *school*

>

> and Melmark.: - www.*melmark*.org/

>

> I tried School: www.*timothyschool*.com since it sells itself

> as being for kids with Autsm or PDD. , but they are looking for kids who

> have much higher functioning ability then Elie had.

>

> There may be others that I didn't find!!! I didn't look for any schools

> that were religious. I did go to the state list for APS.

>

>

>

>

> > I live in South Eastern Montgomery County, PA., just outside of

> > Philadelphia.

> > Thank you so much for your help.

> > On Sun, Sep 11, 2011 at 1:15 PM, Sara Cohen

> wrote:

> >

> > > **

> > >

> > >

> > > What community do you live in. - can give you a better idea of schools,

> > > checked out or some directions.

> > >

> > >

> > >

> > >

> > > > Thank you so much for this information. I did not want my daughter in

> a

> > > > private segregated school. I wanted her in public school, where I

> > thought

> > > > she would do better, with the right supports. I am now rethinking,

> and

> > > > trying to find out what would be the best environment for her. She

> will

> > > be

> > > > going to High School next year, and I am so worried about that,

> because

> > > it

> > > > is not a good situation, from what I see. I am open to exploring all

> > > ideas

> > > > at this point.

> > > >

> > > > On Sun, Sep 11, 2011 at 1:00 PM, Sara Cohen

> > > wrote:

> > > >

> > > > > **

> > > > >

> > > > >

> > > > > Ariella, you are not alone. And you are not alone in the area in

> > which

> > > > you

> > > > > live. There are several members in the Philly area!

> > > > >

> > > > > One of the reasons we moved to a suburb of PA was for the plethora

> of

> > > > > schools. We found our s/d very non-responsive at 15 to our son's

> > needs.

> > > > > They gave us the option of finding a private (APS) school or using

> > the

> > > > > stand

> > > > > alone Intermediate unit school nearly across the street from our

> > home.

> > > So

> > > > > we tried it. Started in Sept, but Oct I realized it was a mistake

> and

> > > by

> > > > > January found another school and moved him. For 5 years he attended

> > the

> > > > > son School at Elwyn. I would have preferred the MELMARK school

> > > where

> > > > > MAddie goes (Donna Duffy can tell you about it) but Elie did not

> fit

> > in

> > > > > there. I also explored the CAMPHILL SCHOOL for special kids, but

> Elie

> > > > HATED

> > > > > the atmosphere. His panic was awful to see. While the son

> school

> > > was

> > > > > not much to my liking to begin with (totally segregated, 45 minutes

> > > from

> > > > > our home, ), Elie LOVED it - from the minute he walked in the door

> > and

> > > > > noticed the paintings on the ceiling!! AAnd their behavior mod

> > program

> > > > > worked for him. He was loved and cared for there - Something I will

> > > never

> > > > > take for granted - he was never abused or mistreated there.

> > > > >

> > > > >

> > > > > On Sun, Sep 11, 2011 at 12:51 PM, ariella

> > > wrote:

> > > > >

> > > > > > , you are so right.

> > > > > > Like I said, we got lucky. It was luck that that brought us to

> the

> > > > right

> > > > > > solutions for the time. If we had the ASD diagnosis, my daughter

> > > would

> > > > > have

> > > > > > been farmed out to a " special school " for " those kids " . Her whole

> > > > > > educational plan would have been radically different. Our school

> > > > district

> > > > > > loves to send to other schools, those children who do not easily

> > " fit

> > > > > in " .

> > > > > > Only in that area is what I mean by it was better for us, looking

> > > back.

> > > > I

> > > > > > apologize for the misunderstanding I created.

> > > > > > There are drawbacks, for sure, and there is no doubt a lot of

> > > services

> > > > > that

> > > > > > my daughter should have had, but I don't know what they are, or

> how

> > > to

> > > > > get

> > > > > > them. We have been on this journey of discovery alone, with our

> > > > daughter

> > > > > > for

> > > > > > 15 years. Until very recently, I thought my daugher was the only

> > > child

> > > > > who

> > > > > > had both ASD and Downs.

> > > > > > Reading the messages here has been a real eye-opener to me. I

> hear

> > a

> > > > lot

> > > > > of

> > > > > > things that we all have in common, that I never would have

> related,

> > > > such

> > > > > as

> > > > > > the issues with toilet training. I always thought that was

> because

> > of

> > > > her

> > > > > > intestines. Now I see that could be more cognitive, seeing how so

> > > many

> > > > of

> > > > > > our children have the same issue, for example.

> > > > > > I know I will gain a lot from this group. For the first time, I

> do

> > > not

> > > > > feel

> > > > > > alone.

> > > > > >

> > > > > > On Sun, Sep 11, 2011 at 12:30 PM, Sara Cohen <

> > pastmidvale@...>

> > > > > > wrote:

> > > > > >

> > > > > > > **

> > > > > > >

> > > > > > >

> > > > > > > We also used sign with Elie and one of the signs was LOOK AT MY

> > > > > > MOUTH/Face>

> > > > > > > We still use that sometimes when he is having trouble

> > understanding

> > > -

> > > > > > that

> > > > > > > helps him move his focus from his own hands, toy, object on the

> > > other

> > > > > > side

> > > > > > > of the room, reflection - what ever!! It also is beginning (at

> > > 26yo)

> > > > to

> > > > > > see

> > > > > > > emotions especially if we want him to know ifweare happy , sad,

> > > very

> > > > > > quiet,

> > > > > > > help me. HE is finally recognizing facial signals if they are

> BIG

> > > > > ENOUGH.

> > > > > > >

> > > > > > > I must disagree with Ariella about knowing about ASD. . For us

> > the

> > > > > > > recognition by the s/d of his additional dx changed everything.

> > > Funny

> > > > -

> > > > > > we

> > > > > > > were in PA too at that time. But we used the clinic at Hershey

> > > > Medical

> > > > > > > Center rather than CHOP or Dupont.

> > > > > > >

> > > > > > > One thing we learned at HErshey which could be emulated

> anyplace

> > -

> > > > and

> > > > > I

> > > > > > > feel, should be, is the team approach. We had a few day long

> > visits

> > > > > where

> > > > > > > the Developmental ped, the educational consultant, the child

> > psych,

> > > > > > > hearing/OT/PT/SLP all worked together in their own disciplines

> to

> > > > come

> > > > > to

> > > > > > a

> > > > > > > consensus of what would help. The educational consultant was

> > > > especially

> > > > > > > helpful for me to take to the school, as was the OT for

> sensory.

> > We

> > > > > went

> > > > > > to

> > > > > > > several session with the SLP and then had a consult from her

> for

> > > the

> > > > > > school

> > > > > > > as well.

> > > > > > >

> > > > > > > While our son has a 30% hearing loss in low tones, bilaterally,

> > we

> > > > all

> > > > > > > decided that was NOT a disadvantage for our son. IT helped

> block

> > > some

> > > > > of

> > > > > > > the things that were so frightening to him - loud sounds as an

> > > > example.

> > > > > > >

> > > > > > > Oh - we also used the Greenspan approach for modification of

> > > behavior

> > > > > > > until he reached an understanding of PRIMACK PRINCIPLES. Once

> he

> > > > began

> > > > > to

> > > > > > > understand first this, then that, we started being able to

> reward

> > > > > > > compliance which increased cooperation, learned waiting, etc.

> > > > > > >

> > > > > > >

> > > > > > > On Sun, Sep 11, 2011 at 12:07 PM, ariella <

> ariella528@...>

> > > > > wrote:

> > > > > > >

> > > > > > > > My heart goes out to you.

> > > > > > > > My daughter was not diagnosed with autism until age 10. The

> > > school

> > > > > > > district

> > > > > > > > still does not recognize her as autistic, and for us, this is

> a

> > > > plus!

> > > > > > She

> > > > > > > > would be even more isolated and segregated than she is now,

> if

> > > the

> > > > > ASD

> > > > > > > was

> > > > > > > > added on earlier!

> > > > > > > > Everything was explained as " typical " for Downs children, and

> > if

> > > > that

> > > > > > did

> > > > > > > > not fit, She " possibly had a seizure " , or, once her hearing

> > > > > impairment

> > > > > > > was

> > > > > > > > recognized, it was explained as " hearing-related defiant

> > > behavior " .

> > > > > It

> > > > > > > was

> > > > > > > > a

> > > > > > > > very savvy therapist at CHOP Philadelphia who was able to

> make

> > > the

> > > > > > > > diagnosis.

> > > > > > > > It is still a struggle, at age 15, but we look back, and are

> > very

> > > > > glad

> > > > > > > the

> > > > > > > > diagnosis was missed early. We already used the Greenspan

> model

> > > for

> > > > > > > > behavior

> > > > > > > > modification, and used sign language also, not knowing she

> had

> > > ASD

> > > > or

> > > > > > was

> > > > > > > > hearing impaired. Like I said, we got lucky! I knew she had

> > > > behavior

> > > > > > > > problems for a long time, and I researched many models for

> > > behavior

> > > > > > > > management, and went to the state dept of education workshops

> > for

> > > > > > years,

> > > > > > > to

> > > > > > > > get ideas. In restrospect, we did choose the right one for

> her,

> > > and

> > > > > we

> > > > > > > > insisted the school district adopt the same plan. I am still

> > > trying

> > > > > to

> > > > > > > get

> > > > > > > > sign language for all speech impaired children, because it

> > works

> > > to

> > > > > > > lessen

> > > > > > > > the tantrums, if the child can effectively communicate his

> > needs,

> > > > > > > thoughts,

> > > > > > > > fears, etc. I see a small glimmer of hope, because the new

> > > teachers

> > > > > > > coming

> > > > > > > > up are being taught a universal education model, that uses

> all

> > > the

> > > > > > > senses.

> > > > > > > > This has worked in Vermont for years! Finally, someone

> > recognizes

> > > > > that

> > > > > > we

> > > > > > > > do

> > > > > > > > not all learn the same way. The statistics prove that typical

> > > > > children

> > > > > > > > actually learn faster and have higher test scores, when

> exposed

> > > to

> > > > > this

> > > > > > > > model. There is hope. Her best friend is in the gifted

> program

> > at

> > > > our

> > > > > > > > school.

> > > > > > > >

> > > > > > > > On Sun, Sep 11, 2011 at 11:16 AM, <

> > > > > mom4dakotariley@...

> > > > > > > > >wrote:

> > > > > > > >

> > > > > > > > > **

> > > > > > > > >

> > > > > > > > >

> > > > > > > > > Welcome to the group! What you are going through sounds

> like

> > > what

> > > > I

> > > > > > > went

> > > > > > > > > through with my son at that age. Facial recognition has

> > always

> > > > been

> > > > > > an

> > > > > > > > > issue, as well as shying away from social interaction and

> > most

> > > > > > " toys " .

> > > > > > > > Even

> > > > > > > > > now that he is almost 7, we still have issues with the

> toys.

> > He

> > > > > > prefers

> > > > > > > > to

> > > > > > > > > play with half full water bottles, and spin while holding

> > > > clothing.

> > > > > I

> > > > > > > do

> > > > > > > > > have a suggestion, that I got from a mom who had been there

> > and

> > > > > done

> > > > > > > > that,

> > > > > > > > > but I will always pass along her warning. She suggested

> that

> > if

> > > > ur

> > > > > > > child

> > > > > > > > is

> > > > > > > > > showing interest in hands, how about trying to communicate

> > > using

> > > > > sign

> > > > > > > > > language? Even if it's just one sign, it will give u time

> > with

> > > > your

> > > > > > > > child,

> > > > > > > > > which you may be lacking now due to the lack of social

> > > > interaction,

> > > > > > and

> > > > > > > > it

> > > > > > > > > may stimulate your child into wanting more. This was

> > extremely

> > > > > > helpful

> > > > > > > > for

> > > > > > > > > me and my son, since he was my first child and I almost

> > needed

> > > > some

> > > > > > > > > interaction out of selfishness. After lots of tears and

> > > > frustrating

> > > > > > > > times,

> > > > > > > > > my son finally gave me what I had been wanting for so long:

> > he

> > > > > > actually

> > > > > > > > > reached for my hand! I knew what he was wanting, and it

> > wasn't

> > > > > really

> > > > > > > me,

> > > > > > > > > but he was wanting me to interact with him for the first

> > time.

> > > > Over

> > > > > > > time,

> > > > > > > > he

> > > > > > > > > would look to me to sign new things to him, which satisfied

> > his

> > > > > needs

> > > > > > > of

> > > > > > > > > exploring through his hands as well as my need of wanting

> to

> > > > > interact

> > > > > > > > with

> > > > > > > > > my child. Hope this helps.

> > > > > > > > >

> > > > > > > > > mom to Cody (6.5 DS/ASD) and Stormie (2.5)

> > > > > > > > >

> > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > > >

[Guest guest]

I'm not sure about the potty training issue. We get ESY through the school

district. I'm in the process of finding out-of-home respite care for

through the DDD. They said they might be able to help us find a summer camp.

can be aggressive so for us that's usually the dealbreaker.

Sent from my iPhone

> I'm learning from you and the group that there is not one program that will

> work for everyone. I just have to find the right one for my daughter. Thank

> you so much. I can only imagine what it would be like to have more than one

> child with ASD. (I have 3 with ADHD, but that is not so hard to deal with.

> ). Do all of the schools you mention take children in diapers? That was my

> biggest issue with ESY programs at first. No one wants an older child who is

> indiapers that I have found around here. Then, when the hear the dual

> diagnosis, they let you know that your child would not be a " good candidate "

> for this program, etc.

>

>

>

>

>> **

>>

>>

>> Hi, Ariella,

>>

>> I'm , and live in south NJ with my DH, our 4 children, 3 dogs and 2

>> cats. We have 3 boys, all on the autism spectrum, and a daughter who is

>> quirky and bright, but at 5 seems more or less NT. My is 6, he has

>> the dual dx. His older brothers, 8 and 10, are in a therapeutic school with

>> an Asperger's program. They are both highly academically gifted but have

>> mild Asperger's. They're both doing so well in their school, and have made

>> _real_ friendships for the first time ever. Public school was too loud, too

>> fast, too bright, and too much for my boys. They went through their days in

>> a state of sensory overload. Changing classes, walking through busy halls,

>> constant transitions, was just way too much for them. Now, they're able to

>> focus on learning academics and social skills and organization skills.

>>

>> For now, is still in the PS. I'm very happy with their lower

>> elementary school and even the upper elementary for special needs. I am very

>> sad that my 8-year-old is missing out on the upper elementary, which he

>> would've started this year. But was falling apart in second grade,

>> nothing they tried (and they tried everything) was working. It was just the

>> wrong place for him. I have no reason to think the upper elementary would've

>> been different.

>> Anyway, private schools can be really, really good.

>>

>>

>>

>>

>> Sent from my iPhone

>>

>>

>>

>>> Thank you so much for this information. I did not want my daughter in a

>>> private segregated school. I wanted her in public school, where I thought

>>> she would do better, with the right supports. I am now rethinking, and

>>> trying to find out what would be the best environment for her. She will

>> be

>>> going to High School next year, and I am so worried about that, because

>> it

>>> is not a good situation, from what I see. I am open to exploring all

>> ideas

>>> at this point.

>>>

>>> On Sun, Sep 11, 2011 at 1:00 PM, Sara Cohen

>> wrote:

>>>

>>>> **

>>>>

>>>>

>>>> Ariella, you are not alone. And you are not alone in the area in which

>> you

>>>> live. There are several members in the Philly area!

>>>>

>>>> One of the reasons we moved to a suburb of PA was for the plethora of

>>>> schools. We found our s/d very non-responsive at 15 to our son's needs.

>>>> They gave us the option of finding a private (APS) school or using the

>>>> stand

>>>> alone Intermediate unit school nearly across the street from our home.

>> So

>>>> we tried it. Started in Sept, but Oct I realized it was a mistake and by

>>>> January found another school and moved him. For 5 years he attended the

>>>> son School at Elwyn. I would have preferred the MELMARK school

>> where

>>>> MAddie goes (Donna Duffy can tell you about it) but Elie did not fit in

>>>> there. I also explored the CAMPHILL SCHOOL for special kids, but Elie

>> HATED

>>>> the atmosphere. His panic was awful to see. While the son school

>> was

>>>> not much to my liking to begin with (totally segregated, 45 minutes from

>>>> our home, ), Elie LOVED it - from the minute he walked in the door and

>>>> noticed the paintings on the ceiling!! AAnd their behavior mod program

>>>> worked for him. He was loved and cared for there - Something I will

>> never

>>>> take for granted - he was never abused or mistreated there.

>>>>

>>>>

>>>>

>>>>

>>>>> , you are so right.

>>>>> Like I said, we got lucky. It was luck that that brought us to the

>> right

>>>>> solutions for the time. If we had the ASD diagnosis, my daughter would

>>>> have

>>>>> been farmed out to a " special school " for " those kids " . Her whole

>>>>> educational plan would have been radically different. Our school

>> district

>>>>> loves to send to other schools, those children who do not easily " fit

>>>> in " .

>>>>> Only in that area is what I mean by it was better for us, looking back.

>> I

>>>>> apologize for the misunderstanding I created.

>>>>> There are drawbacks, for sure, and there is no doubt a lot of services

>>>> that

>>>>> my daughter should have had, but I don't know what they are, or how to

>>>> get

>>>>> them. We have been on this journey of discovery alone, with our

>> daughter

>>>>> for

>>>>> 15 years. Until very recently, I thought my daugher was the only child

>>>> who

>>>>> had both ASD and Downs.

>>>>> Reading the messages here has been a real eye-opener to me. I hear a

>> lot

>>>> of

>>>>> things that we all have in common, that I never would have related,

>> such

>>>> as

>>>>> the issues with toilet training. I always thought that was because of

>> her

>>>>> intestines. Now I see that could be more cognitive, seeing how so many

>> of

>>>>> our children have the same issue, for example.

>>>>> I know I will gain a lot from this group. For the first time, I do not

>>>> feel

>>>>> alone.

>>>>>

>>>>> On Sun, Sep 11, 2011 at 12:30 PM, Sara Cohen

>>>>> wrote:

>>>>>

>>>>>> **

>>>>>>

>>>>>>

>>>>>> We also used sign with Elie and one of the signs was LOOK AT MY

>>>>> MOUTH/Face>

>>>>>> We still use that sometimes when he is having trouble understanding -

>>>>> that

>>>>>> helps him move his focus from his own hands, toy, object on the other

>>>>> side

>>>>>> of the room, reflection - what ever!! It also is beginning (at 26yo)

>> to

>>>>> see

>>>>>> emotions especially if we want him to know ifweare happy , sad, very

>>>>> quiet,

>>>>>> help me. HE is finally recognizing facial signals if they are BIG

>>>> ENOUGH.

>>>>>>

>>>>>> I must disagree with Ariella about knowing about ASD. . For us the

>>>>>> recognition by the s/d of his additional dx changed everything. Funny

>> -

>>>>> we

>>>>>> were in PA too at that time. But we used the clinic at Hershey Medical

>>>>>> Center rather than CHOP or Dupont.

>>>>>>

>>>>>> One thing we learned at HErshey which could be emulated anyplace - and

>>>> I

>>>>>> feel, should be, is the team approach. We had a few day long visits

>>>> where

>>>>>> the Developmental ped, the educational consultant, the child psych,

>>>>>> hearing/OT/PT/SLP all worked together in their own disciplines to come

>>>> to

>>>>> a

>>>>>> consensus of what would help. The educational consultant was

>> especially

>>>>>> helpful for me to take to the school, as was the OT for sensory. We

>>>> went

>>>>> to

>>>>>> several session with the SLP and then had a consult from her for the

>>>>> school

>>>>>> as well.

>>>>>>

>>>>>> While our son has a 30% hearing loss in low tones, bilaterally, we all

>>>>>> decided that was NOT a disadvantage for our son. IT helped block some

>>>> of

>>>>>> the things that were so frightening to him - loud sounds as an

>> example.

>>>>>>

>>>>>> Oh - we also used the Greenspan approach for modification of behavior

>>>>>> until he reached an understanding of PRIMACK PRINCIPLES. Once he began

>>>> to

>>>>>> understand first this, then that, we started being able to reward

>>>>>> compliance which increased cooperation, learned waiting, etc.

>>>>>>

>>>>>>

>>>>>> On Sun, Sep 11, 2011 at 12:07 PM, ariella

>>>> wrote:

>>>>>>

>>>>>>> My heart goes out to you.

>>>>>>> My daughter was not diagnosed with autism until age 10. The school

>>>>>> district

>>>>>>> still does not recognize her as autistic, and for us, this is a plus!

>>>>> She

>>>>>>> would be even more isolated and segregated than she is now, if the

>>>> ASD

>>>>>> was

>>>>>>> added on earlier!

>>>>>>> Everything was explained as " typical " for Downs children, and if that

>>>>> did

>>>>>>> not fit, She " possibly had a seizure " , or, once her hearing

>>>> impairment

>>>>>> was

>>>>>>> recognized, it was explained as " hearing-related defiant behavior " .

>>>> It

>>>>>> was

>>>>>>> a

>>>>>>> very savvy therapist at CHOP Philadelphia who was able to make the

>>>>>>> diagnosis.

>>>>>>> It is still a struggle, at age 15, but we look back, and are very

>>>> glad

>>>>>> the

>>>>>>> diagnosis was missed early. We already used the Greenspan model for

>>>>>>> behavior

>>>>>>> modification, and used sign language also, not knowing she had ASD or

>>>>> was

>>>>>>> hearing impaired. Like I said, we got lucky! I knew she had behavior

>>>>>>> problems for a long time, and I researched many models for behavior

>>>>>>> management, and went to the state dept of education workshops for

>>>>> years,

>>>>>> to

>>>>>>> get ideas. In restrospect, we did choose the right one for her, and

>>>> we

>>>>>>> insisted the school district adopt the same plan. I am still trying

>>>> to

>>>>>> get

>>>>>>> sign language for all speech impaired children, because it works to

>>>>>> lessen

>>>>>>> the tantrums, if the child can effectively communicate his needs,

>>>>>> thoughts,

>>>>>>> fears, etc. I see a small glimmer of hope, because the new teachers

>>>>>> coming

>>>>>>> up are being taught a universal education model, that uses all the

>>>>>> senses.

>>>>>>> This has worked in Vermont for years! Finally, someone recognizes

>>>> that

>>>>> we

>>>>>>> do

>>>>>>> not all learn the same way. The statistics prove that typical

>>>> children

>>>>>>> actually learn faster and have higher test scores, when exposed to

>>>> this

>>>>>>> model. There is hope. Her best friend is in the gifted program at our

>>>>>>> school.

>>>>>>>

>>>>>>> On Sun, Sep 11, 2011 at 11:16 AM, <

>>>> mom4dakotariley@...

>>>>>>>> wrote:

>>>>>>>

>>>>>>>> **

>>>>>>>>

>>>>>>>>

>>>>>>>> Welcome to the group! What you are going through sounds like what I

>>>>>> went

>>>>>>>> through with my son at that age. Facial recognition has always been

>>>>> an

>>>>>>>> issue, as well as shying away from social interaction and most

>>>>> " toys " .

>>>>>>> Even

>>>>>>>> now that he is almost 7, we still have issues with the toys. He

>>>>> prefers

>>>>>>> to

>>>>>>>> play with half full water bottles, and spin while holding clothing.

>>>> I

>>>>>> do

>>>>>>>> have a suggestion, that I got from a mom who had been there and

>>>> done

>>>>>>> that,

>>>>>>>> but I will always pass along her warning. She suggested that if ur

>>>>>> child

>>>>>>> is

>>>>>>>> showing interest in hands, how about trying to communicate using

>>>> sign

>>>>>>>> language? Even if it's just one sign, it will give u time with your

>>>>>>> child,

>>>>>>>> which you may be lacking now due to the lack of social interaction,

>>>>> and

>>>>>>> it

>>>>>>>> may stimulate your child into wanting more. This was extremely

>>>>> helpful

>>>>>>> for

>>>>>>>> me and my son, since he was my first child and I almost needed some

>>>>>>>> interaction out of selfishness. After lots of tears and frustrating

>>>>>>> times,

>>>>>>>> my son finally gave me what I had been wanting for so long: he

>>>>> actually

>>>>>>>> reached for my hand! I knew what he was wanting, and it wasn't

>>>> really

>>>>>> me,

>>>>>>>> but he was wanting me to interact with him for the first time. Over

>>>>>> time,

>>>>>>> he

>>>>>>>> would look to me to sign new things to him, which satisfied his

>>>> needs

>>>>>> of

>>>>>>>> exploring through his hands as well as my need of wanting to

>>>> interact

>>>>>>> with

>>>>>>>> my child. Hope this helps.

>>>>>>>>

>>>>>>>> mom to Cody (6.5 DS/ASD) and Stormie (2.5)

>>>>>>>>

>>>>>>>>

>>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

[Guest guest]

Our school district has an ESY program that is a joke, to say the least. All

of the children are bunched together, no matter what the diagnosis. One day

is swimming, but my daughter is not allowed in the pool, even with swim

diapers, so that day is a waste. One of the other days is " in the

community " . Sounds good, but the reality is that they bus the kids to the

mall, they " shop " at the dollar tree, and eat out, and go home. I know that

this sets a pattern I do not want to encourage...That is... " everytime I go

out to the mall, I will buy something and eat out " . Not realistic for

sure...That doesn't even bring into mention the issues with noise, sensory

input, etc, that create problems. The other 2 days are " in the classroom " ,

working on IEP goals. Sounds good also, except that with so many children,

and only a couple of " teachers " , what is actually taught? Basically, nothing

that our kids can benefit from. I am currently working on this problem, and

finally I may have some help to actually get action. It has been several

years, and I refuse to put my daughter in that program. The only response I

get from the school district is that this is the only ESY program they

offer. It doesn't matter that it will not work for my daughter. Absolutely

no camp program will accept her. Believe me, I've looked. I've asked for

materials to work with her at home, like books to read, math, science, etc.

I'm told " that can be done " , but I've yet to see anything come hoime. I hope

you do find a camp that would not only accept , but will work for him,

and he will enjoy.

> **

>

>

> I'm not sure about the potty training issue. We get ESY through the school

> district. I'm in the process of finding out-of-home respite care for

> through the DDD. They said they might be able to help us find a summer camp.

> can be aggressive so for us that's usually the dealbreaker.

>

> Sent from my iPhone

>

>

>

>

> > I'm learning from you and the group that there is not one program that

> will

> > work for everyone. I just have to find the right one for my daughter.

> Thank

> > you so much. I can only imagine what it would be like to have more than

> one

> > child with ASD. (I have 3 with ADHD, but that is not so hard to deal

> with.

> > ). Do all of the schools you mention take children in diapers? That was

> my

> > biggest issue with ESY programs at first. No one wants an older child who

> is

> > indiapers that I have found around here. Then, when the hear the dual

> > diagnosis, they let you know that your child would not be a " good

> candidate "

> > for this program, etc.

> >

> >

> > On Sun, Sep 11, 2011 at 1:33 PM, Cookson

> wrote:

> >

> >> **

> >>

> >>

> >> Hi, Ariella,

> >>

> >> I'm , and live in south NJ with my DH, our 4 children, 3 dogs and 2

> >> cats. We have 3 boys, all on the autism spectrum, and a daughter who is

> >> quirky and bright, but at 5 seems more or less NT. My is 6, he

> has

> >> the dual dx. His older brothers, 8 and 10, are in a therapeutic school

> with

> >> an Asperger's program. They are both highly academically gifted but have

> >> mild Asperger's. They're both doing so well in their school, and have

> made

> >> _real_ friendships for the first time ever. Public school was too loud,

> too

> >> fast, too bright, and too much for my boys. They went through their days

> in

> >> a state of sensory overload. Changing classes, walking through busy

> halls,

> >> constant transitions, was just way too much for them. Now, they're able

> to

> >> focus on learning academics and social skills and organization skills.

> >>

> >> For now, is still in the PS. I'm very happy with their lower

> >> elementary school and even the upper elementary for special needs. I am

> very

> >> sad that my 8-year-old is missing out on the upper elementary, which he

> >> would've started this year. But was falling apart in second grade,

> >> nothing they tried (and they tried everything) was working. It was just

> the

> >> wrong place for him. I have no reason to think the upper elementary

> would've

> >> been different.

> >> Anyway, private schools can be really, really good.

> >>

> >>

> >>

> >>

> >> Sent from my iPhone

> >>

> >>

> >>

> >>> Thank you so much for this information. I did not want my daughter in a

> >>> private segregated school. I wanted her in public school, where I

> thought

> >>> she would do better, with the right supports. I am now rethinking, and

> >>> trying to find out what would be the best environment for her. She will

> >> be

> >>> going to High School next year, and I am so worried about that, because

> >> it

> >>> is not a good situation, from what I see. I am open to exploring all

> >> ideas

> >>> at this point.

> >>>

> >>> On Sun, Sep 11, 2011 at 1:00 PM, Sara Cohen

> >> wrote:

> >>>

> >>>> **

> >>>>

> >>>>

> >>>> Ariella, you are not alone. And you are not alone in the area in which

> >> you

> >>>> live. There are several members in the Philly area!

> >>>>

> >>>> One of the reasons we moved to a suburb of PA was for the plethora of

> >>>> schools. We found our s/d very non-responsive at 15 to our son's

> needs.

> >>>> They gave us the option of finding a private (APS) school or using the

> >>>> stand

> >>>> alone Intermediate unit school nearly across the street from our home.

> >> So

> >>>> we tried it. Started in Sept, but Oct I realized it was a mistake and

> by

> >>>> January found another school and moved him. For 5 years he attended

> the

> >>>> son School at Elwyn. I would have preferred the MELMARK school

> >> where

> >>>> MAddie goes (Donna Duffy can tell you about it) but Elie did not fit

> in

> >>>> there. I also explored the CAMPHILL SCHOOL for special kids, but Elie

> >> HATED

> >>>> the atmosphere. His panic was awful to see. While the son school

> >> was

> >>>> not much to my liking to begin with (totally segregated, 45 minutes

> from

> >>>> our home, ), Elie LOVED it - from the minute he walked in the door and

> >>>> noticed the paintings on the ceiling!! AAnd their behavior mod program

> >>>> worked for him. He was loved and cared for there - Something I will

> >> never

> >>>> take for granted - he was never abused or mistreated there.

> >>>>

> >>>>

> >>>> On Sun, Sep 11, 2011 at 12:51 PM, ariella

> wrote:

> >>>>

> >>>>> , you are so right.

> >>>>> Like I said, we got lucky. It was luck that that brought us to the

> >> right

> >>>>> solutions for the time. If we had the ASD diagnosis, my daughter

> would

> >>>> have

> >>>>> been farmed out to a " special school " for " those kids " . Her whole

> >>>>> educational plan would have been radically different. Our school

> >> district

> >>>>> loves to send to other schools, those children who do not easily " fit

> >>>> in " .

> >>>>> Only in that area is what I mean by it was better for us, looking

> back.

> >> I

> >>>>> apologize for the misunderstanding I created.

> >>>>> There are drawbacks, for sure, and there is no doubt a lot of

> services

> >>>> that

> >>>>> my daughter should have had, but I don't know what they are, or how

> to

> >>>> get

> >>>>> them. We have been on this journey of discovery alone, with our

> >> daughter

> >>>>> for

> >>>>> 15 years. Until very recently, I thought my daugher was the only

> child

> >>>> who

> >>>>> had both ASD and Downs.

> >>>>> Reading the messages here has been a real eye-opener to me. I hear a

> >> lot

> >>>> of

> >>>>> things that we all have in common, that I never would have related,

> >> such

> >>>> as

> >>>>> the issues with toilet training. I always thought that was because of

> >> her

> >>>>> intestines. Now I see that could be more cognitive, seeing how so

> many

> >> of

> >>>>> our children have the same issue, for example.

> >>>>> I know I will gain a lot from this group. For the first time, I do

> not

> >>>> feel

> >>>>> alone.

> >>>>>

> >>>>> On Sun, Sep 11, 2011 at 12:30 PM, Sara Cohen

> >>>>> wrote:

> >>>>>

> >>>>>> **

> >>>>>>

> >>>>>>

> >>>>>> We also used sign with Elie and one of the signs was LOOK AT MY

> >>>>> MOUTH/Face>

> >>>>>> We still use that sometimes when he is having trouble understanding

> -

> >>>>> that

> >>>>>> helps him move his focus from his own hands, toy, object on the

> other

> >>>>> side

> >>>>>> of the room, reflection - what ever!! It also is beginning (at 26yo)

> >> to

> >>>>> see

> >>>>>> emotions especially if we want him to know ifweare happy , sad, very

> >>>>> quiet,

> >>>>>> help me. HE is finally recognizing facial signals if they are BIG

> >>>> ENOUGH.

> >>>>>>

> >>>>>> I must disagree with Ariella about knowing about ASD. . For us the

> >>>>>> recognition by the s/d of his additional dx changed everything.

> Funny

> >> -

> >>>>> we

> >>>>>> were in PA too at that time. But we used the clinic at Hershey

> Medical

> >>>>>> Center rather than CHOP or Dupont.

> >>>>>>

> >>>>>> One thing we learned at HErshey which could be emulated anyplace -

> and

> >>>> I

> >>>>>> feel, should be, is the team approach. We had a few day long visits

> >>>> where

> >>>>>> the Developmental ped, the educational consultant, the child psych,

> >>>>>> hearing/OT/PT/SLP all worked together in their own disciplines to

> come

> >>>> to

> >>>>> a

> >>>>>> consensus of what would help. The educational consultant was

> >> especially

> >>>>>> helpful for me to take to the school, as was the OT for sensory. We

> >>>> went

> >>>>> to

> >>>>>> several session with the SLP and then had a consult from her for the

> >>>>> school

> >>>>>> as well.

> >>>>>>

> >>>>>> While our son has a 30% hearing loss in low tones, bilaterally, we

> all

> >>>>>> decided that was NOT a disadvantage for our son. IT helped block

> some

> >>>> of

> >>>>>> the things that were so frightening to him - loud sounds as an

> >> example.

> >>>>>>

> >>>>>> Oh - we also used the Greenspan approach for modification of

> behavior

> >>>>>> until he reached an understanding of PRIMACK PRINCIPLES. Once he

> began

> >>>> to

> >>>>>> understand first this, then that, we started being able to reward

> >>>>>> compliance which increased cooperation, learned waiting, etc.

> >>>>>>

> >>>>>>

> >>>>>> On Sun, Sep 11, 2011 at 12:07 PM, ariella

> >>>> wrote:

> >>>>>>

> >>>>>>> My heart goes out to you.

> >>>>>>> My daughter was not diagnosed with autism until age 10. The school

> >>>>>> district

> >>>>>>> still does not recognize her as autistic, and for us, this is a

> plus!

> >>>>> She

> >>>>>>> would be even more isolated and segregated than she is now, if the

> >>>> ASD

> >>>>>> was

> >>>>>>> added on earlier!

> >>>>>>> Everything was explained as " typical " for Downs children, and if

> that

> >>>>> did

> >>>>>>> not fit, She " possibly had a seizure " , or, once her hearing

> >>>> impairment

> >>>>>> was

> >>>>>>> recognized, it was explained as " hearing-related defiant behavior " .

> >>>> It

> >>>>>> was

> >>>>>>> a

> >>>>>>> very savvy therapist at CHOP Philadelphia who was able to make the

> >>>>>>> diagnosis.

> >>>>>>> It is still a struggle, at age 15, but we look back, and are very

> >>>> glad

> >>>>>> the

> >>>>>>> diagnosis was missed early. We already used the Greenspan model for

> >>>>>>> behavior

> >>>>>>> modification, and used sign language also, not knowing she had ASD

> or

> >>>>> was

> >>>>>>> hearing impaired. Like I said, we got lucky! I knew she had

> behavior

> >>>>>>> problems for a long time, and I researched many models for behavior

> >>>>>>> management, and went to the state dept of education workshops for

> >>>>> years,

> >>>>>> to

> >>>>>>> get ideas. In restrospect, we did choose the right one for her, and

> >>>> we

> >>>>>>> insisted the school district adopt the same plan. I am still trying

> >>>> to

> >>>>>> get

> >>>>>>> sign language for all speech impaired children, because it works to

> >>>>>> lessen

> >>>>>>> the tantrums, if the child can effectively communicate his needs,

> >>>>>> thoughts,

> >>>>>>> fears, etc. I see a small glimmer of hope, because the new teachers

> >>>>>> coming

> >>>>>>> up are being taught a universal education model, that uses all the

> >>>>>> senses.

> >>>>>>> This has worked in Vermont for years! Finally, someone recognizes

> >>>> that

> >>>>> we

> >>>>>>> do

> >>>>>>> not all learn the same way. The statistics prove that typical

> >>>> children

> >>>>>>> actually learn faster and have higher test scores, when exposed to

> >>>> this

> >>>>>>> model. There is hope. Her best friend is in the gifted program at

> our

> >>>>>>> school.

> >>>>>>>

> >>>>>>> On Sun, Sep 11, 2011 at 11:16 AM, <

> >>>> mom4dakotariley@...

> >>>>>>>> wrote:

> >>>>>>>

> >>>>>>>> **

> >>>>>>>>

> >>>>>>>>

> >>>>>>>> Welcome to the group! What you are going through sounds like what

> I

> >>>>>> went

> >>>>>>>> through with my son at that age. Facial recognition has always

> been

> >>>>> an

> >>>>>>>> issue, as well as shying away from social interaction and most

> >>>>> " toys " .

> >>>>>>> Even

> >>>>>>>> now that he is almost 7, we still have issues with the toys. He

> >>>>> prefers

> >>>>>>> to

> >>>>>>>> play with half full water bottles, and spin while holding

> clothing.

> >>>> I

> >>>>>> do

> >>>>>>>> have a suggestion, that I got from a mom who had been there and

> >>>> done

> >>>>>>> that,

> >>>>>>>> but I will always pass along her warning. She suggested that if ur

> >>>>>> child

> >>>>>>> is

> >>>>>>>> showing interest in hands, how about trying to communicate using

> >>>> sign

> >>>>>>>> language? Even if it's just one sign, it will give u time with

> your

> >>>>>>> child,

> >>>>>>>> which you may be lacking now due to the lack of social

> interaction,

> >>>>> and

> >>>>>>> it

> >>>>>>>> may stimulate your child into wanting more. This was extremely

> >>>>> helpful

> >>>>>>> for

> >>>>>>>> me and my son, since he was my first child and I almost needed

> some

> >>>>>>>> interaction out of selfishness. After lots of tears and

> frustrating

> >>>>>>> times,

> >>>>>>>> my son finally gave me what I had been wanting for so long: he

> >>>>> actually

> >>>>>>>> reached for my hand! I knew what he was wanting, and it wasn't

> >>>> really

> >>>>>> me,

> >>>>>>>> but he was wanting me to interact with him for the first time.

> Over

> >>>>>> time,

> >>>>>>> he

> >>>>>>>> would look to me to sign new things to him, which satisfied his

> >>>> needs

> >>>>>> of

> >>>>>>>> exploring through his hands as well as my need of wanting to

> >>>> interact

> >>>>>>> with

> >>>>>>>> my child. Hope this helps.

> >>>>>>>>

> >>>>>>>> mom to Cody (6.5 DS/ASD) and Stormie (2.5)

> >>>>>>>>

> >>>>>>>>

> >>>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

[Guest guest]

I don't know what has takena tahe place of CAmp Joy run by Woods Services.

IT was in Montgomery COunty up near Schwenksville. Elie went there for

summer camp and w/e respite for 5 years. LAst I heard they had closed the

camp a year ago, but nothing in its place. Maybe call 's House in West

Chester and ask them. Elie went swimming there even though he still was not

reliably toilet trained. Hopefully something emerged in its place.

I forgot to mention Kanner school at Devereaux:

http://www.devereux.org/site/ PageServer?pagename=kan_index

One caution: Go yourself and view each place. Then go again with your

child. Ask about behavior methods, staff ratios. MAke sure you SEE the

cclassrooms, bathrooms, changing facilities. Ask about pool regs.

> Our school district has an ESY program that is a joke, to say the least.

> All

> of the children are bunched together, no matter what the diagnosis. One day

> is swimming, but my daughter is not allowed in the pool, even with swim

> diapers, so that day is a waste. One of the other days is " in the

> community " . Sounds good, but the reality is that they bus the kids to the

> mall, they " shop " at the dollar tree, and eat out, and go home. I know that

> this sets a pattern I do not want to encourage...That is... " everytime I go

> out to the mall, I will buy something and eat out " . Not realistic for

> sure...That doesn't even bring into mention the issues with noise, sensory

> input, etc, that create problems. The other 2 days are " in the classroom " ,

> working on IEP goals. Sounds good also, except that with so many children,

> and only a couple of " teachers " , what is actually taught? Basically,

> nothing

> that our kids can benefit from. I am currently working on this problem, and

> finally I may have some help to actually get action. It has been several

> years, and I refuse to put my daughter in that program. The only response I

> get from the school district is that this is the only ESY program they

> offer. It doesn't matter that it will not work for my daughter. Absolutely

> no camp program will accept her. Believe me, I've looked. I've asked for

> materials to work with her at home, like books to read, math, science, etc.

> I'm told " that can be done " , but I've yet to see anything come hoime. I

> hope

> you do find a camp that would not only accept , but will work for

> him,

> and he will enjoy.

>

>

>

> > **

> >

> >

> > I'm not sure about the potty training issue. We get ESY through the

> school

> > district. I'm in the process of finding out-of-home respite care for

>

> > through the DDD. They said they might be able to help us find a summer

> camp.

> > can be aggressive so for us that's usually the dealbreaker.

> >

> > Sent from my iPhone

> >

> >

> >

> >

> > > I'm learning from you and the group that there is not one program that

> > will

> > > work for everyone. I just have to find the right one for my daughter.

> > Thank

> > > you so much. I can only imagine what it would be like to have more than

> > one

> > > child with ASD. (I have 3 with ADHD, but that is not so hard to deal

> > with.

> > > ). Do all of the schools you mention take children in diapers? That was

> > my

> > > biggest issue with ESY programs at first. No one wants an older child

> who

> > is

> > > indiapers that I have found around here. Then, when the hear the dual

> > > diagnosis, they let you know that your child would not be a " good

> > candidate "

> > > for this program, etc.

> > >

> > >

> > > On Sun, Sep 11, 2011 at 1:33 PM, Cookson

> > wrote:

> > >

> > >> **

> > >>

> > >>

> > >> Hi, Ariella,

> > >>

> > >> I'm , and live in south NJ with my DH, our 4 children, 3 dogs and

> 2

> > >> cats. We have 3 boys, all on the autism spectrum, and a daughter who

> is

> > >> quirky and bright, but at 5 seems more or less NT. My is 6, he

> > has

> > >> the dual dx. His older brothers, 8 and 10, are in a therapeutic school

> > with

> > >> an Asperger's program. They are both highly academically gifted but

> have

> > >> mild Asperger's. They're both doing so well in their school, and have

> > made

> > >> _real_ friendships for the first time ever. Public school was too

> loud,

> > too

> > >> fast, too bright, and too much for my boys. They went through their

> days

> > in

> > >> a state of sensory overload. Changing classes, walking through busy

> > halls,

> > >> constant transitions, was just way too much for them. Now, they're

> able

> > to

> > >> focus on learning academics and social skills and organization skills.

> > >>

> > >> For now, is still in the PS. I'm very happy with their lower

> > >> elementary school and even the upper elementary for special needs. I

> am

> > very

> > >> sad that my 8-year-old is missing out on the upper elementary, which

> he

> > >> would've started this year. But was falling apart in second

> grade,

> > >> nothing they tried (and they tried everything) was working. It was

> just

> > the

> > >> wrong place for him. I have no reason to think the upper elementary

> > would've

> > >> been different.

> > >> Anyway, private schools can be really, really good.

> > >>

> > >>

> > >>

> > >>

> > >> Sent from my iPhone

> > >>

> > >>

> > >>

> > >>> Thank you so much for this information. I did not want my daughter in

> a

> > >>> private segregated school. I wanted her in public school, where I

> > thought

> > >>> she would do better, with the right supports. I am now rethinking,

> and

> > >>> trying to find out what would be the best environment for her. She

> will

> > >> be

> > >>> going to High School next year, and I am so worried about that,

> because

> > >> it

> > >>> is not a good situation, from what I see. I am open to exploring all

> > >> ideas

> > >>> at this point.

> > >>>

> > >>> On Sun, Sep 11, 2011 at 1:00 PM, Sara Cohen

> > >> wrote:

> > >>>

> > >>>> **

> > >>>>

> > >>>>

> > >>>> Ariella, you are not alone. And you are not alone in the area in

> which

> > >> you

> > >>>> live. There are several members in the Philly area!

> > >>>>

> > >>>> One of the reasons we moved to a suburb of PA was for the plethora

> of

> > >>>> schools. We found our s/d very non-responsive at 15 to our son's

> > needs.

> > >>>> They gave us the option of finding a private (APS) school or using

> the

> > >>>> stand

> > >>>> alone Intermediate unit school nearly across the street from our

> home.

> > >> So

> > >>>> we tried it. Started in Sept, but Oct I realized it was a mistake

> and

> > by

> > >>>> January found another school and moved him. For 5 years he attended

> > the

> > >>>> son School at Elwyn. I would have preferred the MELMARK school

> > >> where

> > >>>> MAddie goes (Donna Duffy can tell you about it) but Elie did not fit

> > in

> > >>>> there. I also explored the CAMPHILL SCHOOL for special kids, but

> Elie

> > >> HATED

> > >>>> the atmosphere. His panic was awful to see. While the son

> school

> > >> was

> > >>>> not much to my liking to begin with (totally segregated, 45 minutes

> > from

> > >>>> our home, ), Elie LOVED it - from the minute he walked in the door

> and

> > >>>> noticed the paintings on the ceiling!! AAnd their behavior mod

> program

> > >>>> worked for him. He was loved and cared for there - Something I will

> > >> never

> > >>>> take for granted - he was never abused or mistreated there.

> > >>>>

> > >>>>

> > >>>> On Sun, Sep 11, 2011 at 12:51 PM, ariella

> > wrote:

> > >>>>

> > >>>>> , you are so right.

> > >>>>> Like I said, we got lucky. It was luck that that brought us to the

> > >> right

> > >>>>> solutions for the time. If we had the ASD diagnosis, my daughter

> > would

> > >>>> have

> > >>>>> been farmed out to a " special school " for " those kids " . Her whole

> > >>>>> educational plan would have been radically different. Our school

> > >> district

> > >>>>> loves to send to other schools, those children who do not easily

> " fit

> > >>>> in " .

> > >>>>> Only in that area is what I mean by it was better for us, looking

> > back.

> > >> I

> > >>>>> apologize for the misunderstanding I created.

> > >>>>> There are drawbacks, for sure, and there is no doubt a lot of

> > services

> > >>>> that

> > >>>>> my daughter should have had, but I don't know what they are, or how

> > to

> > >>>> get

> > >>>>> them. We have been on this journey of discovery alone, with our

> > >> daughter

> > >>>>> for

> > >>>>> 15 years. Until very recently, I thought my daugher was the only

> > child

> > >>>> who

> > >>>>> had both ASD and Downs.

> > >>>>> Reading the messages here has been a real eye-opener to me. I hear

> a

> > >> lot

> > >>>> of

> > >>>>> things that we all have in common, that I never would have related,

> > >> such

> > >>>> as

> > >>>>> the issues with toilet training. I always thought that was because

> of

> > >> her

> > >>>>> intestines. Now I see that could be more cognitive, seeing how so

> > many

> > >> of

> > >>>>> our children have the same issue, for example.

> > >>>>> I know I will gain a lot from this group. For the first time, I do

> > not

> > >>>> feel

> > >>>>> alone.

> > >>>>>

> > >>>>> On Sun, Sep 11, 2011 at 12:30 PM, Sara Cohen <

> pastmidvale@...>

> > >>>>> wrote:

> > >>>>>

> > >>>>>> **

> > >>>>>>

> > >>>>>>

> > >>>>>> We also used sign with Elie and one of the signs was LOOK AT MY

> > >>>>> MOUTH/Face>

> > >>>>>> We still use that sometimes when he is having trouble

> understanding

> > -

> > >>>>> that

> > >>>>>> helps him move his focus from his own hands, toy, object on the

> > other

> > >>>>> side

> > >>>>>> of the room, reflection - what ever!! It also is beginning (at

> 26yo)

> > >> to

> > >>>>> see

> > >>>>>> emotions especially if we want him to know ifweare happy , sad,

> very

> > >>>>> quiet,

> > >>>>>> help me. HE is finally recognizing facial signals if they are BIG

> > >>>> ENOUGH.

> > >>>>>>

> > >>>>>> I must disagree with Ariella about knowing about ASD. . For us the

> > >>>>>> recognition by the s/d of his additional dx changed everything.

> > Funny

> > >> -

> > >>>>> we

> > >>>>>> were in PA too at that time. But we used the clinic at Hershey

> > Medical

> > >>>>>> Center rather than CHOP or Dupont.

> > >>>>>>

> > >>>>>> One thing we learned at HErshey which could be emulated anyplace -

> > and

> > >>>> I

> > >>>>>> feel, should be, is the team approach. We had a few day long

> visits

> > >>>> where

> > >>>>>> the Developmental ped, the educational consultant, the child

> psych,

> > >>>>>> hearing/OT/PT/SLP all worked together in their own disciplines to

> > come

> > >>>> to

> > >>>>> a

> > >>>>>> consensus of what would help. The educational consultant was

> > >> especially

> > >>>>>> helpful for me to take to the school, as was the OT for sensory.

> We

> > >>>> went

> > >>>>> to

> > >>>>>> several session with the SLP and then had a consult from her for

> the

> > >>>>> school

> > >>>>>> as well.

> > >>>>>>

> > >>>>>> While our son has a 30% hearing loss in low tones, bilaterally, we

> > all

> > >>>>>> decided that was NOT a disadvantage for our son. IT helped block

> > some

> > >>>> of

> > >>>>>> the things that were so frightening to him - loud sounds as an

> > >> example.

> > >>>>>>

> > >>>>>> Oh - we also used the Greenspan approach for modification of

> > behavior

> > >>>>>> until he reached an understanding of PRIMACK PRINCIPLES. Once he

> > began

> > >>>> to

> > >>>>>> understand first this, then that, we started being able to reward

> > >>>>>> compliance which increased cooperation, learned waiting, etc.

> > >>>>>>

> > >>>>>>

> > >>>>>> On Sun, Sep 11, 2011 at 12:07 PM, ariella

> > >>>> wrote:

> > >>>>>>

> > >>>>>>> My heart goes out to you.

> > >>>>>>> My daughter was not diagnosed with autism until age 10. The

> school

> > >>>>>> district

> > >>>>>>> still does not recognize her as autistic, and for us, this is a

> > plus!

> > >>>>> She

> > >>>>>>> would be even more isolated and segregated than she is now, if

> the

> > >>>> ASD

> > >>>>>> was

> > >>>>>>> added on earlier!

> > >>>>>>> Everything was explained as " typical " for Downs children, and if

> > that

> > >>>>> did

> > >>>>>>> not fit, She " possibly had a seizure " , or, once her hearing

> > >>>> impairment

> > >>>>>> was

> > >>>>>>> recognized, it was explained as " hearing-related defiant

> behavior " .

> > >>>> It

> > >>>>>> was

> > >>>>>>> a

> > >>>>>>> very savvy therapist at CHOP Philadelphia who was able to make

> the

> > >>>>>>> diagnosis.

> > >>>>>>> It is still a struggle, at age 15, but we look back, and are very

> > >>>> glad

> > >>>>>> the

> > >>>>>>> diagnosis was missed early. We already used the Greenspan model

> for

> > >>>>>>> behavior

> > >>>>>>> modification, and used sign language also, not knowing she had

> ASD

> > or

> > >>>>> was

> > >>>>>>> hearing impaired. Like I said, we got lucky! I knew she had

> > behavior

> > >>>>>>> problems for a long time, and I researched many models for

> behavior

> > >>>>>>> management, and went to the state dept of education workshops for

> > >>>>> years,

> > >>>>>> to

> > >>>>>>> get ideas. In restrospect, we did choose the right one for her,

> and

> > >>>> we

> > >>>>>>> insisted the school district adopt the same plan. I am still

> trying

> > >>>> to

> > >>>>>> get

> > >>>>>>> sign language for all speech impaired children, because it works

> to

> > >>>>>> lessen

> > >>>>>>> the tantrums, if the child can effectively communicate his needs,

> > >>>>>> thoughts,

> > >>>>>>> fears, etc. I see a small glimmer of hope, because the new

> teachers

> > >>>>>> coming

> > >>>>>>> up are being taught a universal education model, that uses all

> the

> > >>>>>> senses.

> > >>>>>>> This has worked in Vermont for years! Finally, someone recognizes

> > >>>> that

> > >>>>> we

> > >>>>>>> do

> > >>>>>>> not all learn the same way. The statistics prove that typical

> > >>>> children

> > >>>>>>> actually learn faster and have higher test scores, when exposed

> to

> > >>>> this

> > >>>>>>> model. There is hope. Her best friend is in the gifted program at

> > our

> > >>>>>>> school.

> > >>>>>>>

> > >>>>>>> On Sun, Sep 11, 2011 at 11:16 AM, <

> > >>>> mom4dakotariley@...

> > >>>>>>>> wrote:

> > >>>>>>>

> > >>>>>>>> **

> > >>>>>>>>

> > >>>>>>>>

> > >>>>>>>> Welcome to the group! What you are going through sounds like

> what

> > I

> > >>>>>> went

> > >>>>>>>> through with my son at that age. Facial recognition has always

> > been

> > >>>>> an

> > >>>>>>>> issue, as well as shying away from social interaction and most

> > >>>>> " toys " .

> > >>>>>>> Even

> > >>>>>>>> now that he is almost 7, we still have issues with the toys. He

> > >>>>> prefers

> > >>>>>>> to

> > >>>>>>>> play with half full water bottles, and spin while holding

> > clothing.

> > >>>> I

> > >>>>>> do

> > >>>>>>>> have a suggestion, that I got from a mom who had been there and

> > >>>> done

> > >>>>>>> that,

> > >>>>>>>> but I will always pass along her warning. She suggested that if

> ur

> > >>>>>> child

> > >>>>>>> is

> > >>>>>>>> showing interest in hands, how about trying to communicate using

> > >>>> sign

> > >>>>>>>> language? Even if it's just one sign, it will give u time with

> > your

> > >>>>>>> child,

> > >>>>>>>> which you may be lacking now due to the lack of social

> > interaction,

> > >>>>> and

> > >>>>>>> it

> > >>>>>>>> may stimulate your child into wanting more. This was extremely

> > >>>>> helpful

> > >>>>>>> for

> > >>>>>>>> me and my son, since he was my first child and I almost needed

> > some

> > >>>>>>>> interaction out of selfishness. After lots of tears and

> > frustrating

> > >>>>>>> times,

> > >>>>>>>> my son finally gave me what I had been wanting for so long: he

> > >>>>> actually

> > >>>>>>>> reached for my hand! I knew what he was wanting, and it wasn't

> > >>>> really

> > >>>>>> me,

> > >>>>>>>> but he was wanting me to interact with him for the first time.

> > Over

> > >>>>>> time,

> > >>>>>>> he

> > >>>>>>>> would look to me to sign new things to him, which satisfied his

> > >>>> needs

> > >>>>>> of

> > >>>>>>>> exploring through his hands as well as my need of wanting to

> > >>>> interact

> > >>>>>>> with

> > >>>>>>>> my child. Hope this helps.

> > >>>>>>>>

> > >>>>>>>> mom to Cody (6.5 DS/ASD) and Stormie (2.5)

> > >>>>>>>>

> > >>>>>>>>

> > >>>>>>>>

> > >>>>>>>

> > >>>>>>>

> > >>>>>>>

[Guest guest]

Thanks so much. I will check these out.

> **

>

>

> I don't know what has takena tahe place of CAmp Joy run by Woods Services.

> IT was in Montgomery COunty up near Schwenksville. Elie went there for

> summer camp and w/e respite for 5 years. LAst I heard they had closed the

> camp a year ago, but nothing in its place. Maybe call 's House in West

> Chester and ask them. Elie went swimming there even though he still was not

> reliably toilet trained. Hopefully something emerged in its place.

>

> I forgot to mention Kanner school at Devereaux:

> http://www.devereux.org/site/ PageServer?pagename=kan_index

>

> One caution: Go yourself and view each place. Then go again with your

> child. Ask about behavior methods, staff ratios. MAke sure you SEE the

> cclassrooms, bathrooms, changing facilities. Ask about pool regs.

>

>

>

>

> > Our school district has an ESY program that is a joke, to say the least.

> > All

> > of the children are bunched together, no matter what the diagnosis. One

> day

> > is swimming, but my daughter is not allowed in the pool, even with swim

> > diapers, so that day is a waste. One of the other days is " in the

> > community " . Sounds good, but the reality is that they bus the kids to the

> > mall, they " shop " at the dollar tree, and eat out, and go home. I know

> that

> > this sets a pattern I do not want to encourage...That is... " everytime I

> go

> > out to the mall, I will buy something and eat out " . Not realistic for

> > sure...That doesn't even bring into mention the issues with noise,

> sensory

> > input, etc, that create problems. The other 2 days are " in the

> classroom " ,

> > working on IEP goals. Sounds good also, except that with so many

> children,

> > and only a couple of " teachers " , what is actually taught? Basically,

> > nothing

> > that our kids can benefit from. I am currently working on this problem,

> and

> > finally I may have some help to actually get action. It has been several

> > years, and I refuse to put my daughter in that program. The only response

> I

> > get from the school district is that this is the only ESY program they

> > offer. It doesn't matter that it will not work for my daughter.

> Absolutely

> > no camp program will accept her. Believe me, I've looked. I've asked for

> > materials to work with her at home, like books to read, math, science,

> etc.

> > I'm told " that can be done " , but I've yet to see anything come hoime. I

> > hope

> > you do find a camp that would not only accept , but will work for

> > him,

> > and he will enjoy.

> >

> > On Sun, Sep 11, 2011 at 2:38 PM, Cookson

> wrote:

> >

> > > **

> > >

> > >

> > > I'm not sure about the potty training issue. We get ESY through the

> > school

> > > district. I'm in the process of finding out-of-home respite care for

> >

> > > through the DDD. They said they might be able to help us find a summer

> > camp.

> > > can be aggressive so for us that's usually the dealbreaker.

> > >

> > > Sent from my iPhone

> > >

> > >

> > >

> > >

> > > > I'm learning from you and the group that there is not one program

> that

> > > will

> > > > work for everyone. I just have to find the right one for my daughter.

> > > Thank

> > > > you so much. I can only imagine what it would be like to have more

> than

> > > one

> > > > child with ASD. (I have 3 with ADHD, but that is not so hard to deal

> > > with.

> > > > ). Do all of the schools you mention take children in diapers? That

> was

> > > my

> > > > biggest issue with ESY programs at first. No one wants an older child

> > who

> > > is

> > > > indiapers that I have found around here. Then, when the hear the dual

> > > > diagnosis, they let you know that your child would not be a " good

> > > candidate "

> > > > for this program, etc.

> > > >

> > > >

> > > > On Sun, Sep 11, 2011 at 1:33 PM, Cookson

> > > wrote:

> > > >

> > > >> **

> > > >>

> > > >>

> > > >> Hi, Ariella,

> > > >>

> > > >> I'm , and live in south NJ with my DH, our 4 children, 3 dogs

> and

> > 2

> > > >> cats. We have 3 boys, all on the autism spectrum, and a daughter who

> > is

> > > >> quirky and bright, but at 5 seems more or less NT. My is 6,

> he

> > > has

> > > >> the dual dx. His older brothers, 8 and 10, are in a therapeutic

> school

> > > with

> > > >> an Asperger's program. They are both highly academically gifted but

> > have

> > > >> mild Asperger's. They're both doing so well in their school, and

> have

> > > made

> > > >> _real_ friendships for the first time ever. Public school was too

> > loud,

> > > too

> > > >> fast, too bright, and too much for my boys. They went through their

> > days

> > > in

> > > >> a state of sensory overload. Changing classes, walking through busy

> > > halls,

> > > >> constant transitions, was just way too much for them. Now, they're

> > able

> > > to

> > > >> focus on learning academics and social skills and organization

> skills.

> > > >>

> > > >> For now, is still in the PS. I'm very happy with their lower

> > > >> elementary school and even the upper elementary for special needs. I

> > am

> > > very

> > > >> sad that my 8-year-old is missing out on the upper elementary, which

> > he

> > > >> would've started this year. But was falling apart in second

> > grade,

> > > >> nothing they tried (and they tried everything) was working. It was

> > just

> > > the

> > > >> wrong place for him. I have no reason to think the upper elementary

> > > would've

> > > >> been different.

> > > >> Anyway, private schools can be really, really good.

> > > >>

> > > >>

> > > >>

> > > >>

> > > >> Sent from my iPhone

> > > >>

> > > >>

> > > >>

> > > >>> Thank you so much for this information. I did not want my daughter

> in

> > a

> > > >>> private segregated school. I wanted her in public school, where I

> > > thought

> > > >>> she would do better, with the right supports. I am now rethinking,

> > and

> > > >>> trying to find out what would be the best environment for her. She

> > will

> > > >> be

> > > >>> going to High School next year, and I am so worried about that,

> > because

> > > >> it

> > > >>> is not a good situation, from what I see. I am open to exploring

> all

> > > >> ideas

> > > >>> at this point.

> > > >>>

> > > >>> On Sun, Sep 11, 2011 at 1:00 PM, Sara Cohen <pastmidvale@...

> >

> > > >> wrote:

> > > >>>

> > > >>>> **

> > > >>>>

> > > >>>>

> > > >>>> Ariella, you are not alone. And you are not alone in the area in

> > which

> > > >> you

> > > >>>> live. There are several members in the Philly area!

> > > >>>>

> > > >>>> One of the reasons we moved to a suburb of PA was for the plethora

> > of

> > > >>>> schools. We found our s/d very non-responsive at 15 to our son's

> > > needs.

> > > >>>> They gave us the option of finding a private (APS) school or using

> > the

> > > >>>> stand

> > > >>>> alone Intermediate unit school nearly across the street from our

> > home.

> > > >> So

> > > >>>> we tried it. Started in Sept, but Oct I realized it was a mistake

> > and

> > > by

> > > >>>> January found another school and moved him. For 5 years he

> attended

> > > the

> > > >>>> son School at Elwyn. I would have preferred the MELMARK

> school

> > > >> where

> > > >>>> MAddie goes (Donna Duffy can tell you about it) but Elie did not

> fit

> > > in

> > > >>>> there. I also explored the CAMPHILL SCHOOL for special kids, but

> > Elie

> > > >> HATED

> > > >>>> the atmosphere. His panic was awful to see. While the son

> > school

> > > >> was

> > > >>>> not much to my liking to begin with (totally segregated, 45

> minutes

> > > from

> > > >>>> our home, ), Elie LOVED it - from the minute he walked in the door

> > and

> > > >>>> noticed the paintings on the ceiling!! AAnd their behavior mod

> > program

> > > >>>> worked for him. He was loved and cared for there - Something I

> will

> > > >> never

> > > >>>> take for granted - he was never abused or mistreated there.

> > > >>>>

> > > >>>>

> > > >>>> On Sun, Sep 11, 2011 at 12:51 PM, ariella

> > > wrote:

> > > >>>>

> > > >>>>> , you are so right.

> > > >>>>> Like I said, we got lucky. It was luck that that brought us to

> the

> > > >> right

> > > >>>>> solutions for the time. If we had the ASD diagnosis, my daughter

> > > would

> > > >>>> have

> > > >>>>> been farmed out to a " special school " for " those kids " . Her whole

> > > >>>>> educational plan would have been radically different. Our school

> > > >> district

> > > >>>>> loves to send to other schools, those children who do not easily

> > " fit

> > > >>>> in " .

> > > >>>>> Only in that area is what I mean by it was better for us, looking

> > > back.

> > > >> I

> > > >>>>> apologize for the misunderstanding I created.

> > > >>>>> There are drawbacks, for sure, and there is no doubt a lot of

> > > services

> > > >>>> that

> > > >>>>> my daughter should have had, but I don't know what they are, or

> how

> > > to

> > > >>>> get

> > > >>>>> them. We have been on this journey of discovery alone, with our

> > > >> daughter

> > > >>>>> for

> > > >>>>> 15 years. Until very recently, I thought my daugher was the only

> > > child

> > > >>>> who

> > > >>>>> had both ASD and Downs.

> > > >>>>> Reading the messages here has been a real eye-opener to me. I

> hear

> > a

> > > >> lot

> > > >>>> of

> > > >>>>> things that we all have in common, that I never would have

> related,

> > > >> such

> > > >>>> as

> > > >>>>> the issues with toilet training. I always thought that was

> because

> > of

> > > >> her

> > > >>>>> intestines. Now I see that could be more cognitive, seeing how so

> > > many

> > > >> of

> > > >>>>> our children have the same issue, for example.

> > > >>>>> I know I will gain a lot from this group. For the first time, I

> do

> > > not

> > > >>>> feel

> > > >>>>> alone.

> > > >>>>>

> > > >>>>> On Sun, Sep 11, 2011 at 12:30 PM, Sara Cohen <

> > pastmidvale@...>

> > > >>>>> wrote:

> > > >>>>>

> > > >>>>>> **

> > > >>>>>>

> > > >>>>>>

> > > >>>>>> We also used sign with Elie and one of the signs was LOOK AT MY

> > > >>>>> MOUTH/Face>

> > > >>>>>> We still use that sometimes when he is having trouble

> > understanding

> > > -

> > > >>>>> that

> > > >>>>>> helps him move his focus from his own hands, toy, object on the

> > > other

> > > >>>>> side

> > > >>>>>> of the room, reflection - what ever!! It also is beginning (at

> > 26yo)

> > > >> to

> > > >>>>> see

> > > >>>>>> emotions especially if we want him to know ifweare happy , sad,

> > very

> > > >>>>> quiet,

> > > >>>>>> help me. HE is finally recognizing facial signals if they are

> BIG

> > > >>>> ENOUGH.

> > > >>>>>>

> > > >>>>>> I must disagree with Ariella about knowing about ASD. . For us

> the

> > > >>>>>> recognition by the s/d of his additional dx changed everything.

> > > Funny

> > > >> -

> > > >>>>> we

> > > >>>>>> were in PA too at that time. But we used the clinic at Hershey

> > > Medical

> > > >>>>>> Center rather than CHOP or Dupont.

> > > >>>>>>

> > > >>>>>> One thing we learned at HErshey which could be emulated anyplace

> -

> > > and

> > > >>>> I

> > > >>>>>> feel, should be, is the team approach. We had a few day long

> > visits

> > > >>>> where

> > > >>>>>> the Developmental ped, the educational consultant, the child

> > psych,

> > > >>>>>> hearing/OT/PT/SLP all worked together in their own disciplines

> to

> > > come

> > > >>>> to

> > > >>>>> a

> > > >>>>>> consensus of what would help. The educational consultant was

> > > >> especially

> > > >>>>>> helpful for me to take to the school, as was the OT for sensory.

> > We

> > > >>>> went

> > > >>>>> to

> > > >>>>>> several session with the SLP and then had a consult from her for

> > the

> > > >>>>> school

> > > >>>>>> as well.

> > > >>>>>>

> > > >>>>>> While our son has a 30% hearing loss in low tones, bilaterally,

> we

> > > all

> > > >>>>>> decided that was NOT a disadvantage for our son. IT helped block

> > > some

> > > >>>> of

> > > >>>>>> the things that were so frightening to him - loud sounds as an

> > > >> example.

> > > >>>>>>

> > > >>>>>> Oh - we also used the Greenspan approach for modification of

> > > behavior

> > > >>>>>> until he reached an understanding of PRIMACK PRINCIPLES. Once he

> > > began

> > > >>>> to

> > > >>>>>> understand first this, then that, we started being able to

> reward

> > > >>>>>> compliance which increased cooperation, learned waiting, etc.

> > > >>>>>>

> > > >>>>>>

> > > >>>>>> On Sun, Sep 11, 2011 at 12:07 PM, ariella <ariella528@...

> >

> > > >>>> wrote:

> > > >>>>>>

> > > >>>>>>> My heart goes out to you.

> > > >>>>>>> My daughter was not diagnosed with autism until age 10. The

> > school

> > > >>>>>> district

> > > >>>>>>> still does not recognize her as autistic, and for us, this is a

> > > plus!

> > > >>>>> She

> > > >>>>>>> would be even more isolated and segregated than she is now, if

> > the

> > > >>>> ASD

> > > >>>>>> was

> > > >>>>>>> added on earlier!

> > > >>>>>>> Everything was explained as " typical " for Downs children, and

> if

> > > that

> > > >>>>> did

> > > >>>>>>> not fit, She " possibly had a seizure " , or, once her hearing

> > > >>>> impairment

> > > >>>>>> was

> > > >>>>>>> recognized, it was explained as " hearing-related defiant

> > behavior " .

> > > >>>> It

> > > >>>>>> was

> > > >>>>>>> a

> > > >>>>>>> very savvy therapist at CHOP Philadelphia who was able to make

> > the

> > > >>>>>>> diagnosis.

> > > >>>>>>> It is still a struggle, at age 15, but we look back, and are

> very

> > > >>>> glad

> > > >>>>>> the

> > > >>>>>>> diagnosis was missed early. We already used the Greenspan model

> > for

> > > >>>>>>> behavior

> > > >>>>>>> modification, and used sign language also, not knowing she had

> > ASD

> > > or

> > > >>>>> was

> > > >>>>>>> hearing impaired. Like I said, we got lucky! I knew she had

> > > behavior

> > > >>>>>>> problems for a long time, and I researched many models for

> > behavior

> > > >>>>>>> management, and went to the state dept of education workshops

> for

> > > >>>>> years,

> > > >>>>>> to

> > > >>>>>>> get ideas. In restrospect, we did choose the right one for her,

> > and

> > > >>>> we

> > > >>>>>>> insisted the school district adopt the same plan. I am still

> > trying

> > > >>>> to

> > > >>>>>> get

> > > >>>>>>> sign language for all speech impaired children, because it

> works

> > to

> > > >>>>>> lessen

> > > >>>>>>> the tantrums, if the child can effectively communicate his

> needs,

> > > >>>>>> thoughts,

> > > >>>>>>> fears, etc. I see a small glimmer of hope, because the new

> > teachers

> > > >>>>>> coming

> > > >>>>>>> up are being taught a universal education model, that uses all

> > the

> > > >>>>>> senses.

> > > >>>>>>> This has worked in Vermont for years! Finally, someone

> recognizes

> > > >>>> that

> > > >>>>> we

> > > >>>>>>> do

> > > >>>>>>> not all learn the same way. The statistics prove that typical

> > > >>>> children

> > > >>>>>>> actually learn faster and have higher test scores, when exposed

> > to

> > > >>>> this

> > > >>>>>>> model. There is hope. Her best friend is in the gifted program

> at

> > > our

> > > >>>>>>> school.

> > > >>>>>>>

> > > >>>>>>> On Sun, Sep 11, 2011 at 11:16 AM, <

> > > >>>> mom4dakotariley@...

> > > >>>>>>>> wrote:

> > > >>>>>>>

> > > >>>>>>>> **

> > > >>>>>>>>

> > > >>>>>>>>

> > > >>>>>>>> Welcome to the group! What you are going through sounds like

> > what

> > > I

> > > >>>>>> went

> > > >>>>>>>> through with my son at that age. Facial recognition has always

> > > been

> > > >>>>> an

> > > >>>>>>>> issue, as well as shying away from social interaction and most

> > > >>>>> " toys " .

> > > >>>>>>> Even

> > > >>>>>>>> now that he is almost 7, we still have issues with the toys.

> He

> > > >>>>> prefers

> > > >>>>>>> to

> > > >>>>>>>> play with half full water bottles, and spin while holding

> > > clothing.

> > > >>>> I

> > > >>>>>> do

> > > >>>>>>>> have a suggestion, that I got from a mom who had been there

> and

> > > >>>> done

> > > >>>>>>> that,

> > > >>>>>>>> but I will always pass along her warning. She suggested that

> if

> > ur

> > > >>>>>> child

> > > >>>>>>> is

> > > >>>>>>>> showing interest in hands, how about trying to communicate

> using

> > > >>>> sign

> > > >>>>>>>> language? Even if it's just one sign, it will give u time with

> > > your

> > > >>>>>>> child,

> > > >>>>>>>> which you may be lacking now due to the lack of social

> > > interaction,

> > > >>>>> and

> > > >>>>>>> it

> > > >>>>>>>> may stimulate your child into wanting more. This was extremely

> > > >>>>> helpful

> > > >>>>>>> for

> > > >>>>>>>> me and my son, since he was my first child and I almost needed

> > > some

> > > >>>>>>>> interaction out of selfishness. After lots of tears and

> > > frustrating

> > > >>>>>>> times,

> > > >>>>>>>> my son finally gave me what I had been wanting for so long: he

> > > >>>>> actually

> > > >>>>>>>> reached for my hand! I knew what he was wanting, and it wasn't

> > > >>>> really

> > > >>>>>> me,

> > > >>>>>>>> but he was wanting me to interact with him for the first time.

> > > Over

> > > >>>>>> time,

> > > >>>>>>> he

> > > >>>>>>>> would look to me to sign new things to him, which satisfied

> his

> > > >>>> needs

> > > >>>>>> of

> > > >>>>>>>> exploring through his hands as well as my need of wanting to

> > > >>>> interact

> > > >>>>>>> with

> > > >>>>>>>> my child. Hope this helps.

> > > >>>>>>>>

> > > >>>>>>>> mom to Cody (6.5 DS/ASD) and Stormie (2.5)

> > > >>>>>>>>

> > > >>>>>>>>

> > > >>>>>>>>

> > > >>>>>>>

> > > >>>>>>>

> > > >>>>>>>