touching

May 29, 2005

I forgot to mention in my previous post that my 18 year old son who has

autism and OCD as well also has touching compulsions with people. He will

touch

others faces and hair inappropriately (I have managed to teach him to ask at

least and this helps a little) but he will go as far as being bothered by

what someone has one (teachers at school, his dad) and ask them to take certain

articles of clothing off! It is not to see what is underneath it is

because for whatever reason his brain is making him think that this is not

" right "

and needs to be fixed or changed. Since school has not been successful

with working with this and these situations turn into aggressive episodes and

then physical restraint, I have taken it upon myself to try to reduce or

eliminate this behavior by first, ignoring the comment, then if asked again

give a

nonverbal/gesture NO and offer an alternative like shaking hands, or high

five or offer to play a game or do something. If he is still requesting I will

tell him to " mind his own business. touch your shirt! " If this doesn't

work and he continues, then we leave the room or leave the house. Even if it

means standing outside or sitting in the car. We lock the door so he cannot

get out to come for us. He will usually cry and become upset --this is what

I have to be careful with because he has tendancies to headbang and to a very

intense degree. So if I see that he is really in a very anxious state to

begin with or if he wasn't having a great day to begin with then I will just

continue to ignore and avoid him as much as I could without going outside.

Then of course, without trying to reinforce the behavior which is very hard

when I am trying to teach him right from wrong at the same time, I will try to

redirect his thought process by putting the radio on or turning it off, asking

him to do something for me like " hand me that book " or " do you want to go

for a ride in the car and get some ice cream? "

Again, can anyone offer any comments or suggestions that may help or even if

you can relate and would like to share your experiences and how you as a mom

handle things. I can only learn from you and your children because my son

is not able to tell me what the " force " is like that makes him think he " has "

to do these actions.

Thanks again.

D from NJ

18 y.o. son with autism with cognitive deficiencies,

and seizure/spike disorder, OCD, sensory processing and

integration dysfunctioin, cognitive deficiencies, anxiety and

mood dysregulation--BP mixed states and cycling.

Meds: Lamictal 250 mg; Topamax 300 mg;

Celexa 40 mg; Seroquel 1300 mg; Haldol 1.5 mg; daily.

" I

always know that God will not give me more than I can handle, but there are

times when I wish he wouldn't trust me so much! "

January 15, 2008

Hello all -

My 10 year old son w/ Ds is doing some personal " touching " if you know what I

mean. My concern is he doesn't seem to hide to do it and will do in front of

others. He hasn't taken it to " completion " that I know if (again if you know

what I mean). I had an email from his Special Needs teacher that she is

concerned about the bathrooms at school.

I am only letting him wear jeans at school - seems to make the touchy feely

harder to do than with sweats or athletic pants. We are using verbal prompts of

" no touching. "

Any advice or other ideas? Things that worked for others?

January 15, 2008

ï»¿

This has been a problem for us too. Mac's teachers are the ones that brought it to my attention--I knew he would "do it" when bored at home, but didn't realize he was doing it in school. I also thought the problem at school could be quickly solved by making sure he wore jeans vs. sweats, but they said it didn't really matter as he "touched" in almost anything he wore. I wrote a social story and read it to him a couple of times a week and we talk about not touching our privates at school or the store, only at home in the bathroom or bedroom, etc... The OT also sent home a type of premade social story that is called "Touching Tim"--we've also read that a few times. At school they are working on feet on floor, legs under desk, hand/arms on desk as much as possible in the classroom. It isn't 100% but it's better than it was.

Good luck!!

Jill

Mom to Mac (9 yrs., 4th grade, Ds) and Kit (6 yrs., K, Ds)

touching

Hello all - My 10 year old son w/ Ds is doing some personal "touching" if you know what I mean. My concern is he doesn't seem to hide to do it and will do in front of others. He hasn't taken it to "completion" that I know if (again if you know what I mean). I had an email from his Special Needs teacher that she is concerned about the bathrooms at school.I am only letting him wear jeans at school - seems to make the touchy feely harder to do than with sweats or athletic pants. We are using verbal prompts of "no touching."Any advice or other ideas? Things that worked for others?

January 15, 2008

ï»¿

Oh, good piece of advice!

, Mom to 14, DS, Southern CaliforniaTo succeed in life,you need three things:a wishbone, a backbone and a funny bone.~ Reba McIntyre

Diagnosis Down Syndrome: A Site of Hope for New Parents or Parents with a Prenatal Diagnosishttp://www.leeworks.net/DDS/What to Say to Parents of a Child with a Diagnosishttp://www.leeworks.net/DDS/speech.html

touching Hello all - My 10 year old son w/ Ds is doing some personal "touching" if you know what I mean. My concern is he doesn't seem to hide to do it and will do in front of others. He hasn't taken it to "completion" that I know if (again if you know what I mean). I had an email from his Special Needs teacher that she is concerned about the bathrooms at school.I am only letting him wear jeans at school - seems to make the touchy feely harder to do than with sweats or athletic pants. We are using verbal prompts of "no touching."Any advice or other ideas? Things that worked for others?

January 15, 2008

Hahahahahhahaahaaaaaaaaaaaaa!!! Oh, that is priceless!!

From: Down Syndrome Treatment

[mailto:Down Syndrome Treatment ] On Behalf Of T

Sent: Tuesday, January 15, 2008 8:28 PM

Down Syndrome Treatment

Subject: Re: touching

ï»¿

When Eleanor

was in 4th grade they had the lecture on touching and reporting it.

Immediately

thereafter I took her to Chicago for a TASH Conference. It was December and

dark

when we

boarded the van for transport into the city. The van had a two big steps up to

a seat

and we had

the last space right on the edge. Everyone in the van was jet lagged,

impatient, etc.

Oh, and

silent.

Eleanor

squirmed into the space right on the edge above the stairs and I put my arm

around her shoulder to hold

her in and

keep her from falling off the seat. When I did she said in her shrillest and

most victimized

voice.

" Don't touch me there, that's a private place. "

The all

female passengers didn't know whether to mace me or beat me with their shoes.

A tense

moment.

-----

Original Message -----

From: McElwee

Down Syndrome Treatment

Sent: Tuesday, January 15,

2008 5:18 PM

Subject: Re:

touching

ï»¿

PRIVACY

is the key word here....teach PRIVACY

It's

ok to touch yourself IN YOUR ROOM WITH THE DOOR CLOSED!!

For

everybody here that needs to start the minute your kids even think it feels the

slightest bit good...then they know that they CAN do it, and WHERE it is ok to

do it...

Also,

buy Terri Couwenhoven's book Teaching Children with Down syndrome about their

Bodies BOUNDARIES and Sexuality

The

teachers need to tell your kids 'that is ok at home, but not here at

school---you need privacy'.

they still need assistance? KNOCK before you enter a room (after they

learn it's ok in their bedroom with the door closed you'd better knock..I

walked in a few things I didn't want to see!) TELL THEM I'm giving you

privacy, call me when you need me to help you (wipe, or shampoo hair, or

whatever) then leave and close the door.

Tell

them 'I'm going to the bathroom, and I need PRIVACY and will have the door

closed. " Teach privacy by modeling it.

I

went to Terri's workshop a few years ago and she said she's called out to group

homes that have problems with their residents having sex in the park!

Well, they aren't allowed to have it in the group home, no doors on the

bedrooms or bathrooms in one she was in (because once somebody flushed too much

tp and clogged the toilet, so nobody gets privacy anymore) So, they have

no concept of privacy, so why not 'do it' in the park next to the swing set!

Good

luck!!

,

Mom to 14, DS, Southern California

To succeed in life,

you need three things:

a wishbone, a backbone and a funny bone.

~ Reba McIntyre

Diagnosis Down Syndrome: A Site of Hope for New Parents or Parents with a

Prenatal Diagnosis

http://www.leeworks.net/DDS/

What to Say to Parents of a Child with a Diagnosis

http://www.leeworks.net/DDS/speech.html

-----

Original Message -----

From: Jill

Down Syndrome Treatment

Sent: Tuesday, January 15,

2008 4:56 PM

Subject: Re:

touching

ï»¿

This has been a problem for

us too. Mac's teachers are the ones that brought it to my attention--I

knew he would " do it " when bored at home, but didn't realize he was

doing it in school. I also thought the problem at school could be quickly

solved by making sure he wore jeans vs. sweats, but they said it didn't really

matter as he " touched " in almost anything he wore. I wrote a

social story and read it to him a couple of times a week and we talk about not

touching our privates at school or the store, only at home in the

bathroom or bedroom, etc... The OT also sent home a type of premade

social story that is called " Touching Tim " --we've also read that a

few times. At school they are working on feet on floor, legs under desk,

hand/arms on desk as much as possible in the classroom. It isn't 100% but

it's better than it was.

Good luck!!

Jill

Mom to Mac (9 yrs., 4th

grade, Ds) and Kit (6 yrs., K, Ds)

-----

Original Message -----

From: Tutwiler

Down Syndrome Treatment

; dsani

; indianadownsyndromecoalition

Sent: Tuesday, January 15,

2008 6:42 PM

Subject:

touching

Hello all -

My 10 year old son w/ Ds is doing some personal " touching " if you

know what I mean. My concern is he doesn't seem to hide to do it and will do in

front of others. He hasn't taken it to " completion " that I know if

(again if you know what I mean). I had an email from his Special Needs teacher

that she is concerned about the bathrooms at school.

I am only letting him wear jeans at school - seems to make the touchy feely

harder to do than with sweats or athletic pants. We are using verbal prompts of

" no touching. "

Any advice or other ideas? Things that worked for others?

January 16, 2008

ï»¿

Hunter (10) has gone through this too (rubbing) and with no discrimination of time or place. Our ped gave us great advice which has worked wonderfully. She told me not to make him feel like he was doing something wrong but to let him no it's not ok to do it anywhere except in his room. At first I was a little reluctant to tell him to go do it in his room because I was afraid it would encourage it but it did the opposite. He doesn't like being in his room when we are all out in the living room. He occasionally will go in his room and do it but I check on him and discourage it by telling him to get a toy or suggest some other activity. Hope this helps.

Patty

January 17, 2008

ï»¿

LMAO! That's a riot! Thanks for sharing, !

My son Zacky with DS is 8 now, so I guess my day is coming soon!

Eunice

touching

Hello all - My 10 year old son w/ Ds is doing some personal "touching" if you know what I mean. My concern is he doesn't seem to hide to do it and will do in front of others. He hasn't taken it to "completion" that I know if (again if you know what I mean). I had an email from his Special Needs teacher that she is concerned about the bathrooms at school.I am only letting him wear jeans at school - seems to make the touchy feely harder to do than with sweats or athletic pants. We are using verbal prompts of "no touching."Any advice or other ideas? Things that worked for others?

February 3, 2008

Who's never won? Biggest Grammy Award surprises of all time on AOL Music.

February 3, 2008

Hi

I have a 5 year old with Down Syndrome and he doesn't do it as much now but he use to hump pillows, toys anything really and IT IS NOT A SEXUAL THING!

His DS doctor said that yes it feels good to them but not in a sexual way. It just stimulation, just like if you sit in a chair and you know how someone moves their feet or leg.. same thing he just humps.

Take care,

Debbie

Who's never won? Biggest Grammy Award surprises of all time on AOL Music.

February 3, 2008

We are going through this with my 4 year old. I was taught that you

dont do it and it is dirty, but now Im being told its OK but to do it

in private? What has changed?

Thanks for any input on this matter

Virginia

February 3, 2008

It's normal and natural for people to touch themselves, and in the past we were made to be ashamed of this, feel guilt and grow up to be prudes in the bedroom....

My friend's son would hump pillows in the living room, and she would call him A Homo and tell him to stop...at age 5 did he know what a homo was? Did that make him feel bad about himself? Did that teach him anything?

The feeligs are there, to teach privacy and 'where and when' to do it is much more appropriate, because no matter how 'dirty' it is, it's still gonna happen....most humans don't have that much self control.

, Mom to 14, DS, Southern CaliforniaTo succeed in life,you need three things:a wishbone, a backbone and a funny bone.~ Reba McIntyre

Diagnosis Down Syndrome: A Site of Hope for New Parents or Parents with a Prenatal Diagnosishttp://www.leeworks.net/DDS/What to Say to Parents of a Child with a Diagnosishttp://www.leeworks.net/DDS/speech.html

Re: touching

We are going through this with my 4 year old. I was taught that you dont do it and it is dirty, but now Im being told its OK but to do it in private? What has changed?Thanks for any input on this matterVirginia

February 3, 2008

Re: humping. began doing this when she was really little 2 or 3, can't remember, and she still does it from time to time at age 19 mostly during or before her period. This may not apply to any of your kids but we recently learned in a video done by Dr. Buie (expert GI doc for autism) that many of our children are not actually touching their private parts but are attempting to find a position directly above the pelvic bone to rub or massage in order to alleviate lower GI pain. I only offer this because I had always assumed it was a normal sexual thing but it is so prevalent in autism that many or us are looking closer now....literally LOL.

Just something you might want to check into; I even found that when I sat behind and massaged her lower (low low) abdomen she seemed very relieved and she has never in all these years...how shall I say this...."consummated?" the "humping". I realize she's been rubbing a shall we say, "higher" area and it's almost totally stopped now that she's been treated for IBD and Crohn's. Still happening as I said with PMS cramps.

I just hate now to think of even one child getting "the lecture" who is actually attempting to tell you they're in pain. I am certainly not saying all touching or humping is pain related (Thank goodness) but on the off chance that it might be I hope you all will inquire or check just a tad bit closer. Sometimes autistic kids will posture, or hang over the arm of a chair, or table edge or whatever and it has been interpreted as sexual rather than

communicative of pain. If only I had known ....all those poor Barney dolls and adorable stuffed animals that ravaged over the years weren't evidence of impending nymphomania. "They" kept telling us she didn't have any GI problems so what was I supposed to think. Hindsight huh?

Just a thought, probably not appicable

Sherry

February 3, 2008

WOW! Very interesting because the friend I was referring to her son also has Autism and big time bowl issues...he's 14 now...I'll have to forward her this email!

This is such a great group to learn from everybody!

, Mom to 14, DS, Southern CaliforniaTo succeed in life,you need three things:a wishbone, a backbone and a funny bone.~ Reba McIntyre

Diagnosis Down Syndrome: A Site of Hope for New Parents or Parents with a Prenatal Diagnosishttp://www.leeworks.net/DDS/What to Say to Parents of a Child with a Diagnosishttp://www.leeworks.net/DDS/speech.html

Re: touching

Re: humping. began doing this when she was really little 2 or 3, can't remember, and she still does it from time to time at age 19 mostly during or before her period. This may not apply to any of your kids but we recently learned in a video done by Dr. Buie (expert GI doc for autism) that many of our children are not actually touching their private parts but are attempting to find a position directly above the pelvic bone to rub or massage in order to alleviate lower GI pain. I only offer this because I had always assumed it was a normal sexual thing but it is so prevalent in autism that many or us are looking closer now....literally LOL.

Just something you might want to check into; I even found that when I sat behind and massaged her lower (low low) abdomen she seemed very relieved and she has never in all these years...how shall I say this...."consummated?" the "humping". I realize she's been rubbing a shall we say, "higher" area and it's almost totally stopped now that she's been treated for IBD and Crohn's. Still happening as I said with PMS cramps.

I just hate now to think of even one child getting "the lecture" who is actually attempting to tell you they're in pain. I am certainly not saying all touching or humping is pain related (Thank goodness) but on the off chance that it might be I hope you all will inquire or check just a tad bit closer. Sometimes autistic kids will posture, or hang over the arm of a chair, or table edge or whatever and it has been interpreted as sexual rather than

communicative of pain. If only I had known ....all those poor Barney dolls and adorable stuffed animals that ravaged over the years weren't evidence of impending nymphomania. "They" kept telling us she didn't have any GI problems so what was I supposed to think. Hindsight huh?

Just a thought, probably not appicable

Sherry

February 3, 2008

...oh goody; I'm so glad that might be helpful!!

Have her or you check out this website...go down to Andy Wakefield's video (He's the controversial doc who discovered live measles from vaccinations and got hounded out of England). Controversial or not, he's a pleasure to listen to and he's the one I believe who actually mentions the "posturing".

http://www.autismmedia.org/media5.html

Sherry

February 3, 2008

...OK I lied, I just listened to Wakefield again and he's not the one who describes posturing. I believe it's Buie...the third one down. But your friend could profit from watching all these videos. My dh and I just sat here with our jaws dropping watching them describe . In fact in response to your previous post about behavior and also Carol's....the best thing your little ones could probably do is to tuck this website into the backpacks of any autistic kids they run into LOL. I can't believe how these kids are constantly and immediately medicated with psychotropic drugs and the physical pain symptoms (admittedly unexpected) ignored.

Maybe might understand her autistic aquaintances better if she were to understand that they are often very much in pain and have no voice to express it. I know she understands physical pain with her history! They do very often hit themselves or others because they are in pain .....NOT that hitting is acceptable for any reason. This would put one up on alot of the parents of autistic kids.

just went off to FLY at a carnival with her therapist so I had better rest. DH just took off to Mexico to fish for a few days. Another tough job.

Sherry

February 4, 2008

> we recently learned in a video done by Dr. Buie (expert GI doc for

> autism) that many of our children are not actually touching their

> private parts but are attempting to find a position directly above the

> pelvic bone to rub or massage in order to alleviate lower GI pain

Thanks for posting this Sherry. has done this sporadically since

she was 8 months old. I remember posting about it on the lists then and

didn't really get any response and I was beside myself. Who ever heard

of an infant doing this? I finally made a connection when she was around

4 that she only does this when she is overdue for a bowel movement. So

this makes sense to me.

Hope

February 4, 2008

I have not noticed doing this, but the again if she is constipated I typically massage her belly. However, before the lichen sclerosis was dx she was touching herself a lot and I really just assumed it was self exploration, but it got a bit 'violent' as the pain set in and she would hit herself trying to squelch the pain. I have 5 boys. 3 grandsons and an older girl and I have to say that all in all little kids spend so VERY little in the way of masturbating. The boys tend to spend more hands on time, but considering the location and prominence of their equipment, it makes sense. :-) And in many ways that preoccupation NEVER stops...reminds of the 'How to Shower' I just saw recently. ;-)I have never seen any of my little people truly masturbating....older kids, I could see

touching in public becoming an issue. But small children, I would tend to look for other causes before assuming sexual activity. Carol in IL AIM doihavtasay1 GigaTribe doihavtasayMom to seven including , 7 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me. Join our Down Syndrome information group - Down Syndrome Treatment/ Listen to oldest dd's music http://www.myspace.com/vennamusic----- Original Message ----From: Hope <rhsikes@...>Down Syndrome Treatment Sent: Monday, February 4, 2008 5:14:41 AMSubject: Re: touching