Re: Re: New To Group- Son with DS, Epilepsy and Possibly Autism

[Guest guest]

My daughter, Arianna, is 4. She was born with DS and was just diagnosed with

autism a few weeks ago. She sounds a lot like your children. She has no

communication but " eeee " and " beee " . But when she was 3, she could say mama,

daddy, etc. She has great motor skills, but no fine motor skills (can't feed

herself, etc.) She was also diagnosed with sensory integration dysfunction. She

is supposed to go to Kinder this year, but being a Kinder teacher, I am not sure

I would dare send her! She needs so much therapy (40 hours a week of ABA - and

she isn't a behavior problem!) It is hard because she doesn't fit in the DS or

the autism groups as she is a combo of both and therefore, it's difficult to

find others who understand.

What kind of therapies have you done??? I am on the list for a charter school

for autistic kids, but that is a year away! Other than that, I can do it all on

my own with the Lovaas method or send her to public school and make them deal

with her! EEKS!!

Let me know!

Lori

Re: New To Group- Son with DS, Epilepsy and Possibly Autism

> Hi Sydney,

My son, , was dually diagnosed at age 2.5 years with Pervasive

Developmental Disorder (PDD). My husband and I also had suspicions

when was 2 years old, because he was not developing in the

same way as his other peers with Down Syndrome. will be 3 yrs.

in August and is signficantly delayed across the board in all areas

of development. We had evaluated by 2 neurodevelopmental

pediatricians-both confirmed the PDD diagnosis. Therefore, follow

your instincts regarding your son. In our experience, we eventually

found physicians and other professionals to support our concerns.

Best of luck.

Sincerely,

McDonnell

Mom to , DS/PDD-NOS- 33 months

> Good Morning,

> I just recently joined this group in hopes of seeking advice from

> other moms who may share similar diagnosis with their children.

My

> 2nd child, Aidan, was born 3 years ago. We knew right away that

he

> was born with Down Syndrome. Up until last July, he was quite

> healthy. He started having absent seiures and was diagnosed with

> Epilepsy. About that time, I started to notice something just was

> not " normal " with his development. He was falling behind compared

> to his DS peers. At that same time we moved from Beaverton to

> Eugene so we had alot of change in our lives. Then in March,

Aidan's

> seiures came back, and this time much worse. The Ped Neurologist

> comfirmed possible brain damage.

> However- myself and his EI specialist have noticed Aidan has

several

> autistic characteristics. We had him tested for Autism, but due

to

> Aidan not showing peaks and valleys in his development he did not

> meet the Autism eligibilty requirments.

> Right now, Aidan is not even on the charts for communication. He

> does not understand simple verbal commands or simple concepts. He

> does not have any communication skills, we try a few signs but he

> maybe only understands " more " . He has just started walking but

not

> very steady on his feet.

> Some of the severe delay could be due to his medication, but

talking

> to another mom who has a young DS child with epilepsy, I find that

> Aidan's delay is more than it should be.

> Sorry for my long message, it actually could have been alot more.

> So my first question is..Do any of you moms share in my

experience?

> My other question is for the moms who have children with both DS

and

> Autism- at what age was the autism diagnosed? Is three just to

> young?

> Aidan can light up a room with his smile, he is so loved by all

his

> familiy, friends, and teachers. His greatest gift is his absolute

> love for people. He could snuggle all day long with you.

>

> My best to all- thank you in advance for your time,

> Sydney Shook

> Mom to 51-2 and Aidan 3

>

--------------------------------------------------

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--------------------------------------------

[Guest guest]

Hello Lori

I can say that my daughter, Kate who is 14 and only diagonosed this past year is

much more affected by her autism, than by the D.s.I have 5 adopted children who

have Down syndrome. My son Andy, 25 is classically autistic. Very little speech,

lines up things..very limited interests.affectionate to family and a few

friends, but only on his terms. Kate is " high functioning " in most instances,

but her social skills are lacking. She appears very shy, but is not really

shy..it is the autism. She wants to have friends very much(and pretends to have

friends...but she really has no friends.. that is the worse part for me. All in

all she is pretty happy..we have lots of " help " through family support(from ARC)

and she loves our college and high school workers. She has been in several

community plays,takes dance lessons, and is in Marching Band where she plays the

tambourine( in regular band she plays the clarinet, but she is very small, and

it is too hard to march and play the big clarinet at the same time.She has never

had any behavior problems per se.(she can't be around loud noises, etc)

Brigid

Re: New To Group- Son with DS, Epilepsy and Possibly

Autism

> Hi Sydney,

My son, , was dually diagnosed at age 2.5 years with Pervasive

Developmental Disorder (PDD). My husband and I also had suspicions

when was 2 years old, because he was not developing in the

same way as his other peers with Down Syndrome. will be 3 yrs.

in August and is signficantly delayed across the board in all areas

of development. We had evaluated by 2 neurodevelopmental

pediatricians-both confirmed the PDD diagnosis. Therefore, follow

your instincts regarding your son. In our experience, we eventually

found physicians and other professionals to support our concerns.

Best of luck.

Sincerely,

McDonnell

Mom to , DS/PDD-NOS- 33 months

> Good Morning,

> I just recently joined this group in hopes of seeking advice from

> other moms who may share similar diagnosis with their children.

My

> 2nd child, Aidan, was born 3 years ago. We knew right away that

he

> was born with Down Syndrome. Up until last July, he was quite

> healthy. He started having absent seiures and was diagnosed with

> Epilepsy. About that time, I started to notice something just was

> not " normal " with his development. He was falling behind compared

> to his DS peers. At that same time we moved from Beaverton to

> Eugene so we had alot of change in our lives. Then in March,

Aidan's

> seiures came back, and this time much worse. The Ped Neurologist

> comfirmed possible brain damage.

> However- myself and his EI specialist have noticed Aidan has

several

> autistic characteristics. We had him tested for Autism, but due

to

> Aidan not showing peaks and valleys in his development he did not

> meet the Autism eligibilty requirments.

> Right now, Aidan is not even on the charts for communication. He

> does not understand simple verbal commands or simple concepts. He

> does not have any communication skills, we try a few signs but he

> maybe only understands " more " . He has just started walking but

not

> very steady on his feet.

> Some of the severe delay could be due to his medication, but

talking

> to another mom who has a young DS child with epilepsy, I find that

> Aidan's delay is more than it should be.

> Sorry for my long message, it actually could have been alot more.

> So my first question is..Do any of you moms share in my

experience?

> My other question is for the moms who have children with both DS

and

> Autism- at what age was the autism diagnosed? Is three just to

> young?

> Aidan can light up a room with his smile, he is so loved by all

his

> familiy, friends, and teachers. His greatest gift is his absolute

> love for people. He could snuggle all day long with you.

>

> My best to all- thank you in advance for your time,

> Sydney Shook

> Mom to 51-2 and Aidan 3

>

--------------------------------------------------

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our

kids. Share favorite bookmarks, ideas, and other information by including

them.

Don't forget, messages are a permanent record of the archives for our list.

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--------------------------------------------

[Guest guest]

Hi again!

It is interesting because Arianna has more of the autism than Down Syndrome

symptoms also....even for looks. She never had the line across her hand at

birth, low ears, space between her toes, flat head/face, etc. And for autism she

swings a belt all day, runs in circles, has low speech, but LOVES people, loves

her music loud, and loves to self stim (tramp, " humping " the couch! etc.) We are

getting ready for a MRI to see if she also has silent seizures like I see is

common with others on here...it would almost be a relief because perhaps some

meds can bring back her speech!!!

Lori

Re: Re: New To Group- Son with DS, Epilepsy and Possibly

Autism

Hello Lori

I can say that my daughter, Kate who is 14 and only diagonosed this past year is

much more affected by her autism, than by the D.s.I have 5 adopted children who

have Down syndrome. My son Andy, 25 is classically autistic. Very little speech,

lines up things..very limited interests.affectionate to family and a few

friends, but only on his terms. Kate is " high functioning " in most instances,

but her social skills are lacking. She appears very shy, but is not really

shy..it is the autism. She wants to have friends very much(and pretends to have

friends...but she really has no friends.. that is the worse part for me. All in

all she is pretty happy..we have lots of " help " through family support(from ARC)

and she loves our college and high school workers. She has been in several

community plays,takes dance lessons, and is in Marching Band where she plays the

tambourine( in regular band she plays the clarinet, but she is very small, and

it is too hard to march and play the big clarinet at the same time.She has never

had any behavior problems per se.(she can't be around loud noises, etc)

Brigid

Re: New To Group- Son with DS, Epilepsy and Possibly

Autism

> Hi Sydney,

My son, , was dually diagnosed at age 2.5 years with Pervasive

Developmental Disorder (PDD). My husband and I also had suspicions

when was 2 years old, because he was not developing in the

same way as his other peers with Down Syndrome. will be 3 yrs.

in August and is signficantly delayed across the board in all areas

of development. We had evaluated by 2 neurodevelopmental

pediatricians-both confirmed the PDD diagnosis. Therefore, follow

your instincts regarding your son. In our experience, we eventually

found physicians and other professionals to support our concerns.

Best of luck.

Sincerely,

McDonnell

Mom to , DS/PDD-NOS- 33 months

> Good Morning,

> I just recently joined this group in hopes of seeking advice from

> other moms who may share similar diagnosis with their children.

My

> 2nd child, Aidan, was born 3 years ago. We knew right away that

he

> was born with Down Syndrome. Up until last July, he was quite

> healthy. He started having absent seiures and was diagnosed with

> Epilepsy. About that time, I started to notice something just was

> not " normal " with his development. He was falling behind compared

> to his DS peers. At that same time we moved from Beaverton to

> Eugene so we had alot of change in our lives. Then in March,

Aidan's

> seiures came back, and this time much worse. The Ped Neurologist

> comfirmed possible brain damage.

> However- myself and his EI specialist have noticed Aidan has

several

> autistic characteristics. We had him tested for Autism, but due

to

> Aidan not showing peaks and valleys in his development he did not

> meet the Autism eligibilty requirments.

> Right now, Aidan is not even on the charts for communication. He

> does not understand simple verbal commands or simple concepts. He

> does not have any communication skills, we try a few signs but he

> maybe only understands " more " . He has just started walking but

not

> very steady on his feet.

> Some of the severe delay could be due to his medication, but

talking

> to another mom who has a young DS child with epilepsy, I find that

> Aidan's delay is more than it should be.

> Sorry for my long message, it actually could have been alot more.

> So my first question is..Do any of you moms share in my

experience?

> My other question is for the moms who have children with both DS

and

> Autism- at what age was the autism diagnosed? Is three just to

> young?

> Aidan can light up a room with his smile, he is so loved by all

his

> familiy, friends, and teachers. His greatest gift is his absolute

> love for people. He could snuggle all day long with you.

>

> My best to all- thank you in advance for your time,

> Sydney Shook

> Mom to 51-2 and Aidan 3

>

--------------------------------------------------

Checkout our homepage for information, bookmarks, and photos of

our

kids. Share favorite bookmarks, ideas, and other information by including

them.

Don't forget, messages are a permanent record of the archives for our list.

http://groups.yahoo.com/group/

--------------------------------------------

[Guest guest]

Welcome Lori

<<autism she swings a belt all day, runs in circles, has low speech, but LOVES

people, loves her music loud, and loves to self stim (tramp, " humping " the

couch! etc.)>>

Well certainly doesn't love people, altho she licks some of her favorite

people on the TV screen while videos are on. Music always VERY loud...and what

is it about that magic 4yo humping age for our little girls??? I can't tell you

how many Barney dolls were deflowered on our couches during those years...it

passed fortunately.

Glad to have you here

Sherry mom to 17, DS/Aut

[Guest guest]

LOL Sherry....right now Arianna is on a " High School Musical " kick....I had

to go buy the movie last night as the tape from the Disney Channel wore itself

out. She too loves to lick people...and puts her face right up to the

screen!!! I am trying to figure out what to do with her as far as school

goes....I

have an interview next week for a first grade job at the school I taught at

before I took medical leave for her. They have a severe unit and I could work

with

them to develop a program, but I highly doubt they know much about ABA or

Lovaas

They said they could give her all the therapies but I bet it is only 2x a

week and we all know these kids need it all day long....funny thing yesterday in

the middle of her eee's and bbb's, my older son yelled DADDY and she repeated

after him DADDY...then said eee bbbb....we tried it 2 more times and she did

it again, then never again! LOL....it feels like she has a bunch of things that

just didn't get connected somehow!

Anyway, glad to find people who understand the self stim thing and the need

for loud music, licking people, picky food eaters, etc. I am going to force her

to feed herself this summer - and refuse to do it for her....hope I can

survive the biting and hair pulling!!!

Lori

[Guest guest]

Isaac is now 6 and also had words at an earlier age, but lost them all when the

autism " kicked in " . He has also great gross motor skills but poor fine motor

skills. He just started feeding himself last year- and that just took us

refusing to feed him, let go of the mess he makes, and being consistent about

not feeding him. I found floortime extremely helpful. He has ABA at school,

but floortime and behavior mod at home. He is in special day for half of the

day and inclusion with an aide the second half of the day. The school he

attends has an " autism track " , so he doesn't quite fit in as well- but the other

kids we know in the district don't have the social difficulites- so I think it

will continue to be a difficult situation of not fitting in either ds or asd

groups.

Itsteach1@... wrote:

My daughter, Arianna, is 4. She was born with DS and was just diagnosed with

autism a few weeks ago. She sounds a lot like your children. She has no

communication but " eeee " and " beee " . But when she was 3, she could say mama,

daddy, etc. She has great motor skills, but no fine motor skills (can't feed

herself, etc.) She was also diagnosed with sensory integration dysfunction. She

is supposed to go to Kinder this year, but being a Kinder teacher, I am not sure

I would dare send her! She needs so much therapy (40 hours a week of ABA - and

she isn't a behavior problem!) It is hard because she doesn't fit in the DS or

the autism groups as she is a combo of both and therefore, it's difficult to

find others who understand.

What kind of therapies have you done??? I am on the list for a charter school

for autistic kids, but that is a year away! Other than that, I can do it all on

my own with the Lovaas method or send her to public school and make them deal

with her! EEKS!!

Let me know!

Lori

Re: New To Group- Son with DS, Epilepsy and Possibly Autism

> Hi Sydney,

My son, , was dually diagnosed at age 2.5 years with Pervasive

Developmental Disorder (PDD). My husband and I also had suspicions

when was 2 years old, because he was not developing in the

same way as his other peers with Down Syndrome. will be 3 yrs.

in August and is signficantly delayed across the board in all areas

of development. We had evaluated by 2 neurodevelopmental

pediatricians-both confirmed the PDD diagnosis. Therefore, follow

your instincts regarding your son. In our experience, we eventually

found physicians and other professionals to support our concerns.

Best of luck.

Sincerely,

McDonnell

Mom to , DS/PDD-NOS- 33 months

> Good Morning,

> I just recently joined this group in hopes of seeking advice from

> other moms who may share similar diagnosis with their children.

My

> 2nd child, Aidan, was born 3 years ago. We knew right away that

he

> was born with Down Syndrome. Up until last July, he was quite

> healthy. He started having absent seiures and was diagnosed with

> Epilepsy. About that time, I started to notice something just was

> not " normal " with his development. He was falling behind compared

> to his DS peers. At that same time we moved from Beaverton to

> Eugene so we had alot of change in our lives. Then in March,

Aidan's

> seiures came back, and this time much worse. The Ped Neurologist

> comfirmed possible brain damage.

> However- myself and his EI specialist have noticed Aidan has

several

> autistic characteristics. We had him tested for Autism, but due

to

> Aidan not showing peaks and valleys in his development he did not

> meet the Autism eligibilty requirments.

> Right now, Aidan is not even on the charts for communication. He

> does not understand simple verbal commands or simple concepts. He

> does not have any communication skills, we try a few signs but he

> maybe only understands " more " . He has just started walking but

not

> very steady on his feet.

> Some of the severe delay could be due to his medication, but

talking

> to another mom who has a young DS child with epilepsy, I find that

> Aidan's delay is more than it should be.

> Sorry for my long message, it actually could have been alot more.

> So my first question is..Do any of you moms share in my

experience?

> My other question is for the moms who have children with both DS

and

> Autism- at what age was the autism diagnosed? Is three just to

> young?

> Aidan can light up a room with his smile, he is so loved by all

his

> familiy, friends, and teachers. His greatest gift is his absolute

> love for people. He could snuggle all day long with you.

>

> My best to all- thank you in advance for your time,

> Sydney Shook

> Mom to 51-2 and Aidan 3

>

--------------------------------------------------

Checkout our homepage for information, bookmarks, and photos of our

kids. Share favorite bookmarks, ideas, and other information by including them.

Don't forget, messages are a permanent record of the archives for our list.

http://groups.yahoo.com/group/

--------------------------------------------

[Guest guest]

Can this school provide your daughter with a personal aide? This would be a way

to get the therapies you want for her all day long. ABA and Lovaas aren't

required learning for teachers and assistants unfortunately. At least they

aren't here. I learned ABA a long time ago with my own son. I also went through

where he would not eat. The doctor said he will eat when he is hungry. He will

not starve. Good Luck to you. I hope you get what you are requesting.

---------------------------------

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[Guest guest]

Can this school provide your daughter with a personal aide? This would be a way

to get the therapies you want for her all day long. ABA and Lovaas aren't

required learning for teachers and assistants unfortunately. At least they

aren't here. I learned ABA a long time ago with my own son. I also went through

where he would not eat. The doctor said he will eat when he is hungry. He will

not starve. Good Luck to you. I hope you get what you are requesting.

---------------------------------

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[Guest guest]

Ahhh, High School Musical... My almost 10 year old daughter is totally into

that! I have to admit, the songs are pretty catchy and now find myself singing

them. We have the soundtrack in the car and even is liking it. He

loves " Getcha head in the game " and " Bop To The Top " ! LOL!

Jayne

Itsteach1@... wrote:

LOL Sherry....right now Arianna is on a " High School Musical " kick....I had

to go buy the movie last night as the tape from the Disney Channel wore itself

---------------------------------

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