Re: what does autism look like in people who have DS?

[Guest guest]

Hmmmm...that naïveté is one of the signs of Asperger's (as is difficulty

understanding jokes that depend on social reciprocity--Aspies are great at puns

and wordplay, slapstick humor, but not other types of jokes.

Aspies are supposed to be awful at lying, too.

My older Aspie boy lies all the time, and is not naive. But he has a very hard

time socially. He either has to lead, or be led. Negotiation is very hard for

him!!

Sent from my iPhone

On Aug 7, 2010, at 11:59 AM, " agirlnamedsuess21 "

wrote:

Kris

You are too funny with your closing!

OMG...I left out the repetitious playing of SCOOBY DOO movies. Thank God I still

love dear ol Scooby Doo, but sometimes I have to deal the tantrums, because I

refuse to watch Scooby Doo all day every day! 8)

My son will cry over tiny incidents and yet lay his hand (and get third degree

burns) on the cooktop surface with no flinching.

My son laughed and played, then regressed (regressive autism?)

Food preferences: I do not know how we ever broke the cycle of wanting pizza

(for every meal!!). I think changing from casein to soy helped? But he still has

preferences for certain foods. (Hmmm...as I read your list, I saw myself in some

ways as a child! Not severe, but definitely saw myself as a hiding cautious

child scared of thunder, loud sounds, and I even have pictures in my family

photos of people in the picture and *me* hiding in the background. I had limited

food preferences and disliked anything like meatloaf which I could not easily

discern the ingredients or mashed potatoes, which maked me gag. I did not like

my hair washed nor cut. And looking back, I acted goofy at times, and I think I

was stimming. Ok, I am starting to wonder about *myself*. One quality I know I

have is that I am what people call *gullible* and sometimes cannot *get* a joke

that is not spelled out. I did have concept of danger, which my two ASD kids do

not, but I was more

fearful of strangers (maybe that was instilled in me?). Socially, I was a

lonely child. I remember early on (2 or 3) having friends and then something

happened...I started being alone.)

Anyway, you have given me something to think about here.

> >

> > Welcome all new comers! I am Liz, mom to 10.5 yr. old Tori (aka former

> > Queen of the Head Banger's Ball). I joined this family back in 2003 when

> > Tori was first dxd and THEY ARE MY LIFELINE. Clues that Tori had ASD- Head

> > banging; flapping; major sensory issues; SIB; screaming for hours; sleepless

> > nights for over 6 months; major transition issues; and our favorite-the

> > infamous Stop/Drop/Flop. Since, we have also been dxd with

> > OCD/ODD/Non-Verbal Learning Disability/GERD/Hashimotos/repetative

> > motions-sounds/OSA and a few more I can't remember off the top of my head

> > right now.

> >

> > Tori stood out from the typical kids with Ds that we associated with-She was

> > extremely verbal early, did not walk until she was just short of 4 yrs.,

> > over-stimmed & overwhelmed by being outdoors, hated to leave the house,

> > could not socialize with other kids.

> >

> > Liz

> >

> >

> >

[Guest guest]

>>>>Elie cleared table tops, emptied drawers and THREW THINGS for years. But as

we learned that actions and sounds are all communication, we learned to try

to understand his need to communicate anda all of these things lessened.<<<<

OK so Sara...did you ever determine what Elie was trying to communicate when he

swiped everything off a table or flat surface? I'm still undecided. I tend to

think it was 's way of saying " that doesn't belong there " then again I

wonder if it was just the pure fun of it all as often she would do it very very

slowly waiting for the dropping off of every object individually. She has no

need to still do this. For instance when Elie swiped the new computer at school

off the desk what was he saying? (sorry gotta admit this one still cracks me

up).

Sherry

[Guest guest]

Oh, Sara! I forgot that great behavior. Tori would fling her cup when she

was done (had and still does have a great left), as well as anything within

reach (who said kids with DS had short arms-LIED!). She used to help

herself to people's plates while we were going in or out of restaurants..as

well.

Liz

>

>

> >>>>Elie cleared table tops, emptied drawers and THREW THINGS for years.

> But as

> we learned that actions and sounds are all communication, we learned to try

> to understand his need to communicate anda all of these things

> lessened.<<<<

>

> OK so Sara...did you ever determine what Elie was trying to communicate

> when he swiped everything off a table or flat surface? I'm still undecided.

> I tend to think it was 's way of saying " that doesn't belong there "

> then again I wonder if it was just the pure fun of it all as often she would

> do it very very slowly waiting for the dropping off of every object

> individually. She has no need to still do this. For instance when Elie

> swiped the new computer at school off the desk what was he saying? (sorry

> gotta admit this one still cracks me up).

> Sherry

>

>

[Guest guest]

The computer: I think he was saying get the thing off my desk - now. And

the teacher had said - Don't touch!. Why have a computer on a desk at kids

level and then say don't touch? She was slo the teacher who got her nose

broken because she decided that I really didn't mean it when I said maintain

a 24 inch distance when giving a direction. She decided to get cozy and

talk over his shoulder. He whacked her - then she wanted him expelled for

injuring a teacher!!

Clearing tables - he needs order and that looked like mess to him. He still

keeps his room free of things on his dresser - it is all lined up on his

floor!!!

Never figured out whhy all his clothes had to be out of the drawers.

Remember years ago we drilled a hole through his chest of drawers and then

put a dowel thru it so he couldn't get the drawers open. Now he puts

clothes away appropriately.

>

>

> >>>>Elie cleared table tops, emptied drawers and THREW THINGS for years.

> But as

> we learned that actions and sounds are all communication, we learned to try

> to understand his need to communicate anda all of these things

> lessened.<<<<

>

> OK so Sara...did you ever determine what Elie was trying to communicate

> when he swiped everything off a table or flat surface? I'm still undecided.

> I tend to think it was 's way of saying " that doesn't belong there "

> then again I wonder if it was just the pure fun of it all as often she would

> do it very very slowly waiting for the dropping off of every object

> individually. She has no need to still do this. For instance when Elie

> swiped the new computer at school off the desk what was he saying? (sorry

> gotta admit this one still cracks me up).

> Sherry

>

>

>

[Guest guest]

Sign is great!!! My used to not communicate at all but now signs and

uses PECS. Mostly to ask for either cookies, ketchup (which means " dinner " to

) or " bus " (sigh). Sometimes he asks for a drink, too, or signs " water " .

I'm so happy he's communicating at all...it's been a long road to get here!!

Sent from my iPhone

Thank you for the feedback .

Her speech is pretty limited. She says about 10 words on a daily basis. The

words are not very clear and I don't think that anyone outside our home would

understand most of them. There are about 20-25 other words that she has used for

a few days (enough that we put them on her list of words for her speech teacher)

but now I'm realizing that she has lost those words again.

She does really well with sign and that is her main way to communicate. She

picks up signs very fast and has even created a few of her own. We had a foster

child a while back who was deaf and so my husband and I are both able to

communicate pretty well in sign. I am so thankful for that now since it looks

like that will be Aimee's main way of communicating.

I appreciate what you said about being able to treat autism. To be honest this

is all really throwing me for a loop. I was prepared for DS (and actually have a

huge love for people with DS) but the autism is just scary to me. I keep hoping

I'm wrong about it.

~

> > >

> > > , were my son at your daughter's age been given a doll and a spoon,

he

> > > would have spent the 15 minutes shaking the doll or banagiang athe spoon

on

> > > something. Imagination is not something I ever attributed to his play!

> > > But our kids are all different.

> > >

> > > Mine is mindlessly affectionate - he will hug every adult that he meets -

> > > and then ask their name. Hardly indicates affection - more like rote

> > > behavior.

> > >

> > > He will hug and rub noses with me or my husband, or the young man with

whom

> > > he lives.

> > >

> > > Elie greets every person who comes in his circle - but after hugging and

> > > asking their name, he wanders away and sit in a quiet spot to flap what

ever

> > > he is holding.

> > >

> > > Read some, look at your daughter, but if you suspect ASD _ don't wait and

> > > don't let a pediatrician tell you to wait, she is too young. Children as

> > > young as 2 or so with DS have been dx with ASD. And the earlier you know,

> > > the earlier you can work on the sensory and social issues.

> >

>

[Guest guest]

How on earth are you seeing cell lines??? I don't doubt you, but I'm very

curious!!

Sent from my iPhone

On Aug 7, 2010, at 12:10 AM, " agirlnamedsuess21 "

wrote:

I think my husband has mosaicism (not sure if for DS?), and I am certain he is

on the spectrum. With mosaics, if you know the person, you are able to

physically see the phenotype of at least two different cell lines (like a

chimera in a way). My husband has at least 3 cell lines that I can see, but no

blood work to back it up.

>

>

> Go to medical series on the left, then click on Autism and PDD

> http://www.riverbendds.org/index.htm

> Read especially Capone and Joan Medlen's article from Disability

Solutions...it's 10 years old but still relevant. Dr. Capone at Kennedy Krieger

is someone who has researched the dual dx....not too much info out there

actually.

>

> You can pretty much go by the criteria for Autism itself allowing for a bit

more demonstration of affection and sometimes more imitative play. This wasn't

true for us but the diagnosis is handed out a bit more freely these days.

>

>

> More saved info:

>

> http://www.disabilitysolutions.org/newsletters/files/three/3-5-6.pdf

>

> " Down Syndrome and Autism Internet Information Center

>

> A child with Down syndrome is born in 1 out of every 800 births. An

> estimated 7-10% of those children will be diagnosed as also having an

> autistic spectrum disorder. That means somewhere between 1 in every 10

> and 1 in every 14 children with Down syndrome will also have an

> autistic spectrum disorder. This is much higher than the incidence

> rate for children without Down syndrome. According to the information

> that is available, children with Down syndrome are often not diagnosed

> or evaluated for autism spectrum disorders until much later in life.

> The average age of diagnosis in children being between 9 and 14 years

> old. I have heard from families whose adult children with Down

> syndrome are only now being diagnosed as also having autism. "

> (http://disabilitysolutions.org/dsaiic/downsyndrome.htm)

>

> Sherry, mom to 21 DS-Autism

> PS welcome to the list!!!!

>

>

>

[Guest guest]

My 6-year-old has Asperger's syndrome (mild form of autism). He doesn't have

DS, just Asperger's. So, he is 6 and weighs 39# fully dressed. He dislikes

eating and is very intolerant of new foods. He has no favorite foods and seems

to get no joy from eating, ever. No one has ever called it anorexia, but it

sure feels that way. At his feed team assessment, he was there not 3 minutes

before the OT and ST called in the psychologist. They said it's behavioral.

My son with DS/autism eats beautifully and joyfully.

Sent from my iPhone

Thank you so much to all of you for the replies. I can tell that this is a great

group and I know I will learn a lot from you.

Oh, another thing about Aimee that I wanted to ask about. I have heard the food

issues can be an autism trait. Does anyone here have a child with infantile

anorexia? We got that diagnosis at the beginning of the year after spending 3

weeks in an in-patient feeding program. Aimee does not appear to have any desire

to eat or drink. She either does not feel hunger/thirst or else she doesn't care

about those feelings. We finally had a g-tube placed back in February. She gets

about 90% of her calories and all of her fluids through the tube. She is healthy

now but still has very little interest in eating.

Just curious if anyone has ever seen this with autism. I have not yet found

anyone with just DS who has such severe feeding issues.

~

[Guest guest]

, Ditto on the toy throwing. Much of that stopped when we went casein free

(dairy free), but he still does it sometimes. (I suspect soy as the culprit, but

I do not know for sure, yet.) As for communication, i do not think he is trying

to communicate anything except that he does not know the proper use of the toys.

For instance, LEGOS: sometimes he plays and builds and sometimes he throws. We

just have to redirect and tell him we do not throw LEGOS, we build LEGOS. We

strive to illustrate proper use of items. For instance, we do not sit on tables;

instead, we sit in chairs. Some people do not understand when I insist that

proper use of an item be employed. For instance, we do not play with shaving

cream on the tabel, as shaving cream is used for shaving men's faces and women's

legs. We do not use food for playdough, which someone mentioned doing on a group

somewhere. Some people do this, I don't. Peanuut Butter is for toast and

sandwiches and for dipping apples.

I find it very vital to make it a constant practice to illustrate proper use of

utensils and other items. Otherwise, I will have a wild child on my hands.

> >

> > : As a parent, I too would be concerned. When my son was aninfant

> > and toddler, I was so inexperienced with DS let alone ASD, that I just

> > figured all his stranage behavior was caused by the DS. IT took many years

> > (and I soooo regret not having the dx earlier to help my son) that his

> > behavior became magnified by repition and longevity.

>

[Guest guest]

The person's look changes. I have an example for my son. The pictures were taken

within a month apart, same photographer. One looks like a normal boy. One looks

like a boy with Trisomy 21.

Genotypes are within the cell; Phenotypes are what the cell expresses outwardly.

For instance, we have the gene that makes us have the sandal gap toe in our

family.(genotype) We all express it physically and outwardly.(phenotype)

It was not until recent years that I *realized* my husband was expressing these

genes all in the same person. For years, I seriously thought I was crazy. Then

after that, I thought he was a twin and this was some sort of sick joke

(sleeping with both twins! HA!) Then I started to realize that my son was

expressing two different sets of genes (he had what I call the *twin* syndrome).

Well, I then realized I was seeing both cell lines (the normal cells and the

trisomic cells). I pointed it out to other people, most of who were not around

him day in and day out. Actually, they looked at me strangely. So, I started

carrying the photos around with me and then they said, " WHOA! " They look like

two different people.

I am not crazy, as it does happen. We think diet caused the cells to shift more

rapidly in their expression. Since changing his diet, the cell line expressions

are more subtle (makes them like an allergy of sorts...used to be?)

> >

> >

> > Go to medical series on the left, then click on Autism and PDD

> > http://www.riverbendds.org/index.htm

> > Read especially Capone and Joan Medlen's article from Disability

Solutions...it's 10 years old but still relevant. Dr. Capone at Kennedy Krieger

is someone who has researched the dual dx....not too much info out there

actually.

> >

> > You can pretty much go by the criteria for Autism itself allowing for a bit

more demonstration of affection and sometimes more imitative play. This wasn't

true for us but the diagnosis is handed out a bit more freely these days.

> >

> >

> > More saved info:

> >

> > http://www.disabilitysolutions.org/newsletters/files/three/3-5-6.pdf

> >

> > " Down Syndrome and Autism Internet Information Center

> >

> > A child with Down syndrome is born in 1 out of every 800 births. An

> > estimated 7-10% of those children will be diagnosed as also having an

> > autistic spectrum disorder. That means somewhere between 1 in every 10

> > and 1 in every 14 children with Down syndrome will also have an

> > autistic spectrum disorder. This is much higher than the incidence

> > rate for children without Down syndrome. According to the information

> > that is available, children with Down syndrome are often not diagnosed

> > or evaluated for autism spectrum disorders until much later in life.

> > The average age of diagnosis in children being between 9 and 14 years

> > old. I have heard from families whose adult children with Down

> > syndrome are only now being diagnosed as also having autism. "

> > (http://disabilitysolutions.org/dsaiic/downsyndrome.htm)

> >

> > Sherry, mom to 21 DS-Autism

> > PS welcome to the list!!!!

> >

> >

> >

[Guest guest]

My son with DS/Autism eats like a professional. No one here can out eat him.

But when the autism first came on him, he would not eat anything but biscuits

and gravy, mac and cheese, hot dogs and pizza. Now he still likes hot dogs and

pizza but he is gluten free and his hot dogs are special ordered and his pizza

is homemade but he still likes it...even without cheese. But now, he will eat a

lot of foods. For lunch he had a chicken breast and steamed broccoli,

cauliflower, and carrots. He loved it or seemed to. Did not have to bribe him

to eat it. For supper we had gluten free fish nuggts (Henry and ) and baked

french fries. He only wanted the ff but to get a ff he had to take a bite of

fish. He ate it all. We are so thankful that he now eats.

To:

From: macookson@...

Date: Sat, 7 Aug 2010 18:19:01 -0700

Subject: Re: Re: what does autism look like in people who have DS?

My 6-year-old has Asperger's syndrome (mild form of autism). He doesn't have DS,

just Asperger's. So, he is 6 and weighs 39# fully dressed. He dislikes eating

and is very intolerant of new foods. He has no favorite foods and seems to get

no joy from eating, ever. No one has ever called it anorexia, but it sure feels

that way. At his feed team assessment, he was there not 3 minutes before the OT

and ST called in the psychologist. They said it's behavioral.

My son with DS/autism eats beautifully and joyfully.

Sent from my iPhone

Thank you so much to all of you for the replies. I can tell that this is a great

group and I know I will learn a lot from you.

Oh, another thing about Aimee that I wanted to ask about. I have heard the food

issues can be an autism trait. Does anyone here have a child with infantile

anorexia? We got that diagnosis at the beginning of the year after spending 3

weeks in an in-patient feeding program. Aimee does not appear to have any desire

to eat or drink. She either does not feel hunger/thirst or else she doesn't care

about those feelings. We finally had a g-tube placed back in February. She gets

about 90% of her calories and all of her fluids through the tube. She is healthy

now but still has very little interest in eating.

Just curious if anyone has ever seen this with autism. I have not yet found

anyone with just DS who has such severe feeding issues.

~

[Guest guest]

We were told Aimee's eating issues are behavioral too, but 3 weeks in a

behavior-based feeding program had no effect. I think they say it's behavioral

when there is no physical cause for it. But, it seems to me that there must be

some other option besides physical and behavioral. That's what's going on with

Aimee anyway. I mentioned Aimee's lack of interest in eating to a friend once

and she told me that she does not have an eating disorder but she just doesn't

enjoy eating. She said that she eats because she knows she needs to do it to be

healthy. I wonder if there are some people in the world who just don't enjoy

eating? That seems to be the case with Aimee.

~

>

> Thank you so much to all of you for the replies. I can tell that this is a

great group and I know I will learn a lot from you.

>

> Oh, another thing about Aimee that I wanted to ask about. I have heard the

food issues can be an autism trait. Does anyone here have a child with infantile

anorexia? We got that diagnosis at the beginning of the year after spending 3

weeks in an in-patient feeding program. Aimee does not appear to have any desire

to eat or drink. She either does not feel hunger/thirst or else she doesn't care

about those feelings. We finally had a g-tube placed back in February. She gets

about 90% of her calories and all of her fluids through the tube. She is healthy

now but still has very little interest in eating.

>

> Just curious if anyone has ever seen this with autism. I have not yet found

anyone with just DS who has such severe feeding issues.

>

> ~

>

>

>

>

>

>

>

>

[Guest guest]

's face has gone thru lots of changes as he's grown. At times he looks

NT-like, though an NT toddler (he's 5). When he smiles, you can see his eyes

look T-21.

Sent from my iPhone

On Aug 7, 2010, at 9:48 PM, " agirlnamedsuess21 "

wrote:

The person's look changes. I have an example for my son. The pictures were taken

within a month apart, same photographer. One looks like a normal boy. One looks

like a boy with Trisomy 21.

Genotypes are within the cell; Phenotypes are what the cell expresses outwardly.

For instance, we have the gene that makes us have the sandal gap toe in our

family.(genotype) We all express it physically and outwardly.(phenotype)

It was not until recent years that I *realized* my husband was expressing these

genes all in the same person. For years, I seriously thought I was crazy. Then

after that, I thought he was a twin and this was some sort of sick joke

(sleeping with both twins! HA!) Then I started to realize that my son was

expressing two different sets of genes (he had what I call the *twin* syndrome).

Well, I then realized I was seeing both cell lines (the normal cells and the

trisomic cells). I pointed it out to other people, most of who were not around

him day in and day out. Actually, they looked at me strangely. So, I started

carrying the photos around with me and then they said, " WHOA! " They look like

two different people.

I am not crazy, as it does happen. We think diet caused the cells to shift more

rapidly in their expression. Since changing his diet, the cell line expressions

are more subtle (makes them like an allergy of sorts...used to be?)

> >

> >

> > Go to medical series on the left, then click on Autism and PDD

> > http://www.riverbendds.org/index.htm

> > Read especially Capone and Joan Medlen's article from Disability

Solutions...it's 10 years old but still relevant. Dr. Capone at Kennedy Krieger

is someone who has researched the dual dx....not too much info out there

actually.

> >

> > You can pretty much go by the criteria for Autism itself allowing for a bit

more demonstration of affection and sometimes more imitative play. This wasn't

true for us but the diagnosis is handed out a bit more freely these days.

> >

> >

> > More saved info:

> >

> > http://www.disabilitysolutions.org/newsletters/files/three/3-5-6.pdf

> >

> > " Down Syndrome and Autism Internet Information Center

> >

> > A child with Down syndrome is born in 1 out of every 800 births. An

> > estimated 7-10% of those children will be diagnosed as also having an

> > autistic spectrum disorder. That means somewhere between 1 in every 10

> > and 1 in every 14 children with Down syndrome will also have an

> > autistic spectrum disorder. This is much higher than the incidence

> > rate for children without Down syndrome. According to the information

> > that is available, children with Down syndrome are often not diagnosed

> > or evaluated for autism spectrum disorders until much later in life.

> > The average age of diagnosis in children being between 9 and 14 years

> > old. I have heard from families whose adult children with Down

> > syndrome are only now being diagnosed as also having autism. "

> > (http://disabilitysolutions.org/dsaiic/downsyndrome.htm)

> >

> > Sherry, mom to 21 DS-Autism

> > PS welcome to the list!!!!

> >

> >

> >

[Guest guest]

You sparked a memory. When DJ first entered the center where I worked, none of

the visiting therapist saw " the DS " . In fact, the memory that stays with me was

their surprise. He was very cute & as I have mentioned very very under sized.

Side by side with other little beings with DS, he did not match (facial

features, torso, legs)

When he suddenly started gaining weight (too much) due to his thyroid function,

the DS facial characteristics became very obvious.

Chuckle, tis like he grew into his DS...

Does make me ponder at times IF he ever loses all this weight, whether there

will be another change in his features.

Not that I care-to me he is adorable. Even when he calls me Kris Ann..(hmpf)

Hugs,

Kris

> > >

> > >

> > > Go to medical series on the left, then click on Autism and PDD

> > > http://www.riverbendds.org/index.htm

> > > Read especially Capone and Joan Medlen's article from Disability

Solutions...it's 10 years old but still relevant. Dr. Capone at Kennedy Krieger

is someone who has researched the dual dx....not too much info out there

actually.

> > >

> > > You can pretty much go by the criteria for Autism itself allowing for a

bit more demonstration of affection and sometimes more imitative play. This

wasn't true for us but the diagnosis is handed out a bit more freely these days.

> > >

> > >

> > > More saved info:

> > >

> > > http://www.disabilitysolutions.org/newsletters/files/three/3-5-6.pdf

> > >

> > > " Down Syndrome and Autism Internet Information Center

> > >

> > > A child with Down syndrome is born in 1 out of every 800 births. An

> > > estimated 7-10% of those children will be diagnosed as also having an

> > > autistic spectrum disorder. That means somewhere between 1 in every 10

> > > and 1 in every 14 children with Down syndrome will also have an

> > > autistic spectrum disorder. This is much higher than the incidence

> > > rate for children without Down syndrome. According to the information

> > > that is available, children with Down syndrome are often not diagnosed

> > > or evaluated for autism spectrum disorders until much later in life.

> > > The average age of diagnosis in children being between 9 and 14 years

> > > old. I have heard from families whose adult children with Down

> > > syndrome are only now being diagnosed as also having autism. "

> > > (http://disabilitysolutions.org/dsaiic/downsyndrome.htm)

> > >

> > > Sherry, mom to 21 DS-Autism

> > > PS welcome to the list!!!!

> > >

> > >

> > >

[Guest guest]

Lol, one of the feeding specialists we took to recommended having him play

with food. He was to drive cars thru mashed potatoes and finger paint with

food...the idea was to get him used to textures and lick his hands to get used

to flavors. Make mealtimes fun not stressful. It didn't help but we had fun.

I'm pretty happy to use things non-functionally. I know that psychologists look

for a willingness to pretend a block is a phone (or whatever)...it shows

creativity, flexibility and imaginative play. School projects frequently

require non-functional use of objects, lol, like edible jello dinosaurs and

decorating a turkey with yarn and beads and beans! I remember how happy I was

when my rigid made a castle out of a shoebox. I guess it depends on where

your child is and what they need.

But I also understand the need to be consistent for , teach him how we're

supposed to use things. Still, he sees his sibs making musical rhythm patters

with a fork and bowl...and I'm not about to squelch that. . I love that!

Sent from my iPhone

On Aug 7, 2010, at 9:21 PM, " agirlnamedsuess21 "

wrote:

, Ditto on the toy throwing. Much of that stopped when we went casein free

(dairy free), but he still does it sometimes. (I suspect soy as the culprit, but

I do not know for sure, yet.) As for communication, i do not think he is trying

to communicate anything except that he does not know the proper use of the toys.

For instance, LEGOS: sometimes he plays and builds and sometimes he throws. We

just have to redirect and tell him we do not throw LEGOS, we build LEGOS. We

strive to illustrate proper use of items. For instance, we do not sit on tables;

instead, we sit in chairs. Some people do not understand when I insist that

proper use of an item be employed. For instance, we do not play with shaving

cream on the tabel, as shaving cream is used for shaving men's faces and women's

legs. We do not use food for playdough, which someone mentioned doing on a group

somewhere. Some people do this, I don't. Peanuut Butter is for toast and

sandwiches and for

dipping apples.

I find it very vital to make it a constant practice to illustrate proper use of

utensils and other items. Otherwise, I will have a wild child on my hands.

> >

> > : As a parent, I too would be concerned. When my son was aninfant

> > and toddler, I was so inexperienced with DS let alone ASD, that I just

> > figured all his stranage behavior was caused by the DS. IT took many years

> > (and I soooo regret not having the dx earlier to help my son) that his

> > behavior became magnified by repition and longevity.

>

[Guest guest]

I wa a frail and picky eater growing up (you would not believe it now...lol). I

always looked soooooo thin (looking baxk at my pictures). My 5th grade girl

scout uniform was like a size 6 (like a 6-7 year-old size 6).

However, my son with DS/Autism has NO problem eating. He does have a preference

for certain foods more than the usual person, which seems to be dissipating as

we alter his diet more, which forces me to expand on cooking ideas.

Since his sense of smell has sky-rocketed, his strong limited food preferences

(like pizza all the time) are waning. (He was 5 # 3 oz at birth-go figure).

OTOH, my 3 1/2 yr-old was a whopping chunker at birth (8#) and he is the size of

an 18 month-old; his head is on the small side also. Sharp as a tack, little

stinker, that has some ADHD (inattentive) and wants to be social at dinnertime

rather than eat very much (reminds me of me when I was a kid)....anyway, he only

is in 18 month-24 month clothes (going on 4 years-old and TINYYYYY).

My bet is he will be the largest boy in the family in the end.

When I get worried about him, I just feed him every hour or two just like a

baby. I offer food first, then soy based formula. He eats a few bites sometimes

and then at other times, he will eat an entire sandwich. (Go figure with him

also)

If you want to put some weight on your kiddos, then start making GFCF brownies

(Bobs Red Mill is good). Make GFCF banana bread. Give them all they want. Some

people make zucchini muffins. Whatever they will eat, you serve it-serve

it-serve it. Once they get to really liking it, then add a little extra of for

instance carrot juice to the apple juice.

I call it faking it until you make it.

They will gain weight, but sometimes you have to go in the back door.

One other thing...I had to give my son loratidine (OTC claritin, dye free grape

flavor) 3 times a day. It did something to his brain and turned off the " I'm not

hungry " signal. The allergist told us that sometimes antihistamines do that.

Heck, if you do not have a problem with taking OTC claritin (I do not recommend

benadryl...not exactly the same)m then try it. 3 x day at recommended doses. See

what happens in two weeks. It won't hurt and actually may help.

>

> Thank you so much to all of you for the replies. I can tell that this is a

great group and I know I will learn a lot from you.

>

> Oh, another thing about Aimee that I wanted to ask about. I have heard the

food issues can be an autism trait. Does anyone here have a child with infantile

anorexia? We got that diagnosis at the beginning of the year after spending 3

weeks in an in-patient feeding program. Aimee does not appear to have any desire

to eat or drink. She either does not feel hunger/thirst or else she doesn't care

about those feelings. We finally had a g-tube placed back in February. She gets

about 90% of her calories and all of her fluids through the tube. She is healthy

now but still has very little interest in eating.

>

> Just curious if anyone has ever seen this with autism. I have not yet found

anyone with just DS who has such severe feeding issues.

>

> ~

>

>

>

>

>

>

>

>

[Guest guest]

Karmen, Did you notice his diet expanded when you went GFCF?

>

> Thank you so much to all of you for the replies. I can tell that this is a

great group and I know I will learn a lot from you.

>

> Oh, another thing about Aimee that I wanted to ask about. I have heard the

food issues can be an autism trait. Does anyone here have a child with infantile

anorexia? We got that diagnosis at the beginning of the year after spending 3

weeks in an in-patient feeding program. Aimee does not appear to have any desire

to eat or drink. She either does not feel hunger/thirst or else she doesn't care

about those feelings. We finally had a g-tube placed back in February. She gets

about 90% of her calories and all of her fluids through the tube. She is healthy

now but still has very little interest in eating.

>

> Just curious if anyone has ever seen this with autism. I have not yet found

anyone with just DS who has such severe feeding issues.

>

> ~

>

>

[Guest guest]

I heard that a lot when I first would tell people over the phone (that did not

visit us often). I am NOT talking about changing as you grow. Actually, I doubt

my son and husband grow that much in the course of one day. LOL. My son used to

change 4 or 5 times a day. Worse during a full moon (not kidding); the old OT

commented on it!

It is difficult to explain and you would just have to see it. My assumption

was/is that I was seeing the phenotypes being expressed. Mosaicism is like

chimerism; there are at least 2 different cell lines (like two people in one).

> > >

> > >

> > > Go to medical series on the left, then click on Autism and PDD

> > > http://www.riverbendds.org/index.htm

> > > Read especially Capone and Joan Medlen's article from Disability

Solutions...it's 10 years old but still relevant. Dr. Capone at Kennedy Krieger

is someone who has researched the dual dx....not too much info out there

actually.

> > >

> > > You can pretty much go by the criteria for Autism itself allowing for a

bit more demonstration of affection and sometimes more imitative play. This

wasn't true for us but the diagnosis is handed out a bit more freely these days.

> > >

> > >

> > > More saved info:

> > >

> > > http://www.disabilitysolutions.org/newsletters/files/three/3-5-6.pdf

> > >

> > > " Down Syndrome and Autism Internet Information Center

> > >

> > > A child with Down syndrome is born in 1 out of every 800 births. An

> > > estimated 7-10% of those children will be diagnosed as also having an

> > > autistic spectrum disorder. That means somewhere between 1 in every 10

> > > and 1 in every 14 children with Down syndrome will also have an

> > > autistic spectrum disorder. This is much higher than the incidence

> > > rate for children without Down syndrome. According to the information

> > > that is available, children with Down syndrome are often not diagnosed

> > > or evaluated for autism spectrum disorders until much later in life.

> > > The average age of diagnosis in children being between 9 and 14 years

> > > old. I have heard from families whose adult children with Down

> > > syndrome are only now being diagnosed as also having autism. "

> > > (http://disabilitysolutions.org/dsaiic/downsyndrome.htm)

> > >

> > > Sherry, mom to 21 DS-Autism

> > > PS welcome to the list!!!!

> > >

> > >

> > >

[Guest guest]

,

Yes, his preferences grew after we went gluten free and dairy free.....it took a

while but it did happen that way. We have been able to keep some of his

favorites foods even when gf/cf..... that helped.

To:

From: agirlnamedsuess@...

Date: Sun, 8 Aug 2010 14:14:18 +0000

Subject: Re: what does autism look like in people who have DS?

Karmen, Did you notice his diet expanded when you went GFCF?

>

> Thank you so much to all of you for the replies. I can tell that this is a

great group and I know I will learn a lot from you.

>

> Oh, another thing about Aimee that I wanted to ask about. I have heard the

food issues can be an autism trait. Does anyone here have a child with infantile

anorexia? We got that diagnosis at the beginning of the year after spending 3

weeks in an in-patient feeding program. Aimee does not appear to have any desire

to eat or drink. She either does not feel hunger/thirst or else she doesn't care

about those feelings. We finally had a g-tube placed back in February. She gets

about 90% of her calories and all of her fluids through the tube. She is healthy

now but still has very little interest in eating.

>

> Just curious if anyone has ever seen this with autism. I have not yet found

anyone with just DS who has such severe feeding issues.

>

> ~

>

>

[Guest guest]

I was not referencing not being creative or artistic. But I was speaking more of

ADL's. We do not sit on tables (nothing creative about doing that); we do not

play with our food (food is too expensive and meant for nourishment of our

bodies; and etc...

I encourage creativity as far as *recycling* an object (like a shoebox) into an

art project or pretending a toy is something additional to what it is. There is

nothing creative about throwing blocks across the room and hurting someone. A

block is a block, not matter how one chooses to play with it, as long he plays

with it and realizes it is a toy and not a weapon of destruction.

My kids are VERY creative, but they also know that for instance, you use a ball

and bat to play baseball, a bicycle to get from point A to point B, a toilet for

eliminating wastes (either end), bath water for bathing (not for drinking or

soaking the floor --- & downstairs), etc,,,

I am not talking about creativity like recycling the used pickle jar into a cute

art project and nice pencil holder, but we certainly know that you would not

throw out the pickles just to use the jar.

> > >

> > > : As a parent, I too would be concerned. When my son was aninfant

> > > and toddler, I was so inexperienced with DS let alone ASD, that I just

> > > figured all his stranage behavior was caused by the DS. IT took many years

> > > (and I soooo regret not having the dx earlier to help my son) that his

> > > behavior became magnified by repition and longevity.

> >

>

>

>

>

>

>

>

>

[Guest guest]

doesn't eat brownies of any kind. He likes the Little Bites muffins but

not real homemade ones. There are no foods that really likes to the extent

that he'll eat a lot of it. He doesn't even finish a packet of Little Bites!!!

But, since I don't have to twist his arm (figuratively) to get him to eat one, I

say that he likes them. He'll nibble a candy bar then lays it down and forgets

about it. He threw an ice cream sandwich on the ground because it was broken.

We still have his Easter candy.

He's a smart kid, very articulate, but cannot like eating. DH is 6' tall and

weighs 150#...so beanpole. I was always very skinny as a kid but I ate--I was

just active. My oldest is 9 and tall enough to be on the tall side for his

grade (after he was advanced a year, so he's the youngest). He used to be picky

but once he was old enough to fix his own dinner, I let him make something for

himself if he didn't feel like eating what was for dinner. Most of the time,

it's not worth the effort to him so he just eats what we're having and has even

come to like stuff he used to hate.

My DS baby, , eats well as long as it's something he can chew. Cooked

chicken is good, steak is not. Fish is good, rice is not (he has trouble eating

rice). He eats well at restaurants. He loves crisp salads, and veggies that

are very soft-cooked. He eats more than the 6-year-old and my 4-year-old

daughter combined ( is 5).

Sent from my iPhone

On Aug 8, 2010, at 10:12 AM, " agirlnamedsuess21 "

wrote:

I wa a frail and picky eater growing up (you would not believe it now...lol). I

always looked soooooo thin (looking baxk at my pictures). My 5th grade girl

scout uniform was like a size 6 (like a 6-7 year-old size 6).

However, my son with DS/Autism has NO problem eating. He does have a preference

for certain foods more than the usual person, which seems to be dissipating as

we alter his diet more, which forces me to expand on cooking ideas.

Since his sense of smell has sky-rocketed, his strong limited food preferences

(like pizza all the time) are waning. (He was 5 # 3 oz at birth-go figure).

OTOH, my 3 1/2 yr-old was a whopping chunker at birth (8#) and he is the size of

an 18 month-old; his head is on the small side also. Sharp as a tack, little

stinker, that has some ADHD (inattentive) and wants to be social at dinnertime

rather than eat very much (reminds me of me when I was a kid)....anyway, he only

is in 18 month-24 month clothes (going on 4 years-old and TINYYYYY).

My bet is he will be the largest boy in the family in the end.

When I get worried about him, I just feed him every hour or two just like a

baby. I offer food first, then soy based formula. He eats a few bites sometimes

and then at other times, he will eat an entire sandwich. (Go figure with him

also)

If you want to put some weight on your kiddos, then start making GFCF brownies

(Bobs Red Mill is good). Make GFCF banana bread. Give them all they want. Some

people make zucchini muffins. Whatever they will eat, you serve it-serve

it-serve it. Once they get to really liking it, then add a little extra of for

instance carrot juice to the apple juice.

I call it faking it until you make it.

They will gain weight, but sometimes you have to go in the back door.

One other thing...I had to give my son loratidine (OTC claritin, dye free grape

flavor) 3 times a day. It did something to his brain and turned off the " I'm not

hungry " signal. The allergist told us that sometimes antihistamines do that.

Heck, if you do not have a problem with taking OTC claritin (I do not recommend

benadryl...not exactly the same)m then try it. 3 x day at recommended doses. See

what happens in two weeks. It won't hurt and actually may help.

>

> Thank you so much to all of you for the replies. I can tell that this is a

great group and I know I will learn a lot from you.

>

> Oh, another thing about Aimee that I wanted to ask about. I have heard the

food issues can be an autism trait. Does anyone here have a child with infantile

anorexia? We got that diagnosis at the beginning of the year after spending 3

weeks in an in-patient feeding program. Aimee does not appear to have any desire

to eat or drink. She either does not feel hunger/thirst or else she doesn't care

about those feelings. We finally had a g-tube placed back in February. She gets

about 90% of her calories and all of her fluids through the tube. She is healthy

now but still has very little interest in eating.

>

> Just curious if anyone has ever seen this with autism. I have not yet found

anyone with just DS who has such severe feeding issues.

>

> ~

>

>

>

>

>

>

>

>

[Guest guest]

Neat!

I know one little boy with mosaic DS but never noticed this chimera

aspect...I'll have to ask his mom about it.

Sent from my iPhone

On Aug 8, 2010, at 10:18 AM, " agirlnamedsuess21 "

wrote:

I heard that a lot when I first would tell people over the phone (that did not

visit us often). I am NOT talking about changing as you grow. Actually, I doubt

my son and husband grow that much in the course of one day. LOL. My son used to

change 4 or 5 times a day. Worse during a full moon (not kidding); the old OT

commented on it!

It is difficult to explain and you would just have to see it. My assumption

was/is that I was seeing the phenotypes being expressed. Mosaicism is like

chimerism; there are at least 2 different cell lines (like two people in one).

> > >

> > >

> > > Go to medical series on the left, then click on Autism and PDD

> > > http://www.riverbendds.org/index.htm

> > > Read especially Capone and Joan Medlen's article from Disability

Solutions...it's 10 years old but still relevant. Dr. Capone at Kennedy Krieger

is someone who has researched the dual dx....not too much info out there

actually.

> > >

> > > You can pretty much go by the criteria for Autism itself allowing for a

bit more demonstration of affection and sometimes more imitative play. This

wasn't true for us but the diagnosis is handed out a bit more freely these days.

> > >

> > >

> > > More saved info:

> > >

> > > http://www.disabilitysolutions.org/newsletters/files/three/3-5-6.pdf

> > >

> > > " Down Syndrome and Autism Internet Information Center

> > >

> > > A child with Down syndrome is born in 1 out of every 800 births. An

> > > estimated 7-10% of those children will be diagnosed as also having an

> > > autistic spectrum disorder. That means somewhere between 1 in every 10

> > > and 1 in every 14 children with Down syndrome will also have an

> > > autistic spectrum disorder. This is much higher than the incidence

> > > rate for children without Down syndrome. According to the information

> > > that is available, children with Down syndrome are often not diagnosed

> > > or evaluated for autism spectrum disorders until much later in life.

> > > The average age of diagnosis in children being between 9 and 14 years

> > > old. I have heard from families whose adult children with Down

> > > syndrome are only now being diagnosed as also having autism. "

> > > (http://disabilitysolutions.org/dsaiic/downsyndrome.htm)

> > >

> > > Sherry, mom to 21 DS-Autism

> > > PS welcome to the list!!!!

> > >

> > >

> > >

[Guest guest]

 you are right we need to enforce proper use only.  After kez chose her

hobby of hurling dozens of raw eggs around the kitchen  one at a time and

squealing with joy at each  shattered grenade while the dogs rolled and skated

in shells and slime,  I later found out that her teacher had done this as a

structured activity in her classroom.  Teacher was mortified that she had

introduced such fun and apologized profusely after she heard my

stunned, slippery, dog bathing, ceiling to floor,  clean up stories.

 Since many of our kids can't easily " unlearn "   we must teach somewhat

rigidly. 

Bummer but true.  

________________________________

To:

Sent: Sat, August 7, 2010 9:21:25 PM

Subject: Re: what does autism look like in people who have DS?

 

, Ditto on the toy throwing. Much of that stopped when we went casein free

(dairy free), but he still does it sometimes. (I suspect soy as the culprit, but

I do not know for sure, yet.) As for communication, i do not think he is trying

to communicate anything except that he does not know the proper use of the toys.

For instance, LEGOS: sometimes he plays and builds and sometimes he throws. We

just have to redirect and tell him we do not throw LEGOS, we build LEGOS. We

strive to illustrate proper use of items. For instance, we do not sit on tables;

instead, we sit in chairs. Some people do not understand when I insist that

proper use of an item be employed. For instance, we do not play with shaving

cream on the tabel, as shaving cream is used for shaving men's faces and women's

legs. We do not use food for playdough, which someone mentioned doing on a group

somewhere. Some people do this, I don't. Peanuut Butter is for toast and

sandwiches and for dipping apples.

I find it very vital to make it a constant practice to illustrate proper use of

utensils and other items. Otherwise, I will have a wild child on my hands.

> >

> > : As a parent, I too would be concerned. When my son was aninfant

> > and toddler, I was so inexperienced with DS let alone ASD, that I just

> > figured all his stranage behavior was caused by the DS. IT took many years

> > (and I soooo regret not having the dx earlier to help my son) that his

> > behavior became magnified by repition and longevity.

>

[Guest guest]

I wish this would work for us. Aimee DOES NOT EAT. She doesn't drink either.

She literally goes days without drinking and usually eats just a 2-3 tablespoons

of food per day on a good day. Hence, the reason we have a g-tube. I'm just

so thankful we have it!

~

>

> I wa a frail and picky eater growing up (you would not believe it now...lol).

I always looked soooooo thin (looking baxk at my pictures). My 5th grade girl

scout uniform was like a size 6 (like a 6-7 year-old size 6).

> However, my son with DS/Autism has NO problem eating. He does have a

preference for certain foods more than the usual person, which seems to be

dissipating as we alter his diet more, which forces me to expand on cooking

ideas.

> Since his sense of smell has sky-rocketed, his strong limited food preferences

(like pizza all the time) are waning. (He was 5 # 3 oz at birth-go figure).

> OTOH, my 3 1/2 yr-old was a whopping chunker at birth (8#) and he is the size

of an 18 month-old; his head is on the small side also. Sharp as a tack, little

stinker, that has some ADHD (inattentive) and wants to be social at dinnertime

rather than eat very much (reminds me of me when I was a kid)....anyway, he only

is in 18 month-24 month clothes (going on 4 years-old and TINYYYYY).

> My bet is he will be the largest boy in the family in the end.

> When I get worried about him, I just feed him every hour or two just like a

baby. I offer food first, then soy based formula. He eats a few bites sometimes

and then at other times, he will eat an entire sandwich. (Go figure with him

also)

> If you want to put some weight on your kiddos, then start making GFCF brownies

(Bobs Red Mill is good). Make GFCF banana bread. Give them all they want. Some

people make zucchini muffins. Whatever they will eat, you serve it-serve

it-serve it. Once they get to really liking it, then add a little extra of for

instance carrot juice to the apple juice.

> I call it faking it until you make it.

> They will gain weight, but sometimes you have to go in the back door.

> One other thing...I had to give my son loratidine (OTC claritin, dye free

grape flavor) 3 times a day. It did something to his brain and turned off the

" I'm not hungry " signal. The allergist told us that sometimes antihistamines do

that. Heck, if you do not have a problem with taking OTC claritin (I do not

recommend benadryl...not exactly the same)m then try it. 3 x day at recommended

doses. See what happens in two weeks. It won't hurt and actually may help.

>

[Guest guest]

We had this same thing happen. The teacher was teaching about eggs, let the

kids drop the eggs on a paper and make them splat. Came in the living room one

day and Jake had taken 12 eggs and dropped them down the landing of our stairs

to the basement. He thought it was great. Started having to hid the eggs in

the frig so he would not get them out and drop them around the house.

We als had an OT who taught how to rip paper. Thanks a lot...he still carries

this learned expereince and loves to rip up all his books. Way to go OT!

Holly

[Guest guest]

In my experience, kids will eventually eat when their stomach growls.

If you only have certain choices, then he will eventually eat.

My guess is that he needs a different diet. When I was a child, I hated bread

and milk. What do you know that when I grew up and had 5 kids, I would realize

that the reason I was a picky eater was because the food I was eating hurt my

stomach. You might want to try a GFCF diet. It worked well for us.

> >

> > Thank you so much to all of you for the replies. I can tell that this is a

great group and I know I will learn a lot from you.

> >

> > Oh, another thing about Aimee that I wanted to ask about. I have heard the

food issues can be an autism trait. Does anyone here have a child with infantile

anorexia? We got that diagnosis at the beginning of the year after spending 3

weeks in an in-patient feeding program. Aimee does not appear to have any desire

to eat or drink. She either does not feel hunger/thirst or else she doesn't care

about those feelings. We finally had a g-tube placed back in February. She gets

about 90% of her calories and all of her fluids through the tube. She is healthy

now but still has very little interest in eating.

> >

> > Just curious if anyone has ever seen this with autism. I have not yet found

anyone with just DS who has such severe feeding issues.

> >

> > ~

> >

> >

> >

> >

> >

> >

> >

> >