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Thanks . No, Kody doesn't have a bleeding problem, I guess I should say

that we are aware of. And I KNOW he isn't picking his nose....we are talking

about a kid that won't even blow his nose without a big hassle because he

thinks it is absolutely disgusting! He won't even use the same tissue twice

even if only a drop got on it. Drives me crazy. It was quite shocking to see

him when he got up this morning. Weird that your daughter had the icky

potties with the bloody nose. I am really getting concerned because he says

he can't feel when he has to go. That he has no idea he has to go potty. Not

like him at all. He is very frustrated by it, and very embarrassed. He was

very worried Daddy would be mad at him. :o( Which is so totally not even a

possibility. Daddy is worried but not mad!!!! Poor kid.

Diane, Mom to Kody age 7, Di Syndrome, Hypogammaglobulinemia, Epilepsy,

Asthma, CAPD, VID, Developemental Disorders, also Proud Mom to Arika 15,

Kaila 11, and Sami 9.

Visit my website at: www.geocities.com/schmidtzoo/SNAK.index

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Thanks . No, Kody doesn't have a bleeding problem, I guess I should say

that we are aware of. And I KNOW he isn't picking his nose....we are talking

about a kid that won't even blow his nose without a big hassle because he

thinks it is absolutely disgusting! He won't even use the same tissue twice

even if only a drop got on it. Drives me crazy. It was quite shocking to see

him when he got up this morning. Weird that your daughter had the icky

potties with the bloody nose. I am really getting concerned because he says

he can't feel when he has to go. That he has no idea he has to go potty. Not

like him at all. He is very frustrated by it, and very embarrassed. He was

very worried Daddy would be mad at him. :o( Which is so totally not even a

possibility. Daddy is worried but not mad!!!! Poor kid.

Diane, Mom to Kody age 7, Di Syndrome, Hypogammaglobulinemia, Epilepsy,

Asthma, CAPD, VID, Developemental Disorders, also Proud Mom to Arika 15,

Kaila 11, and Sami 9.

Visit my website at: www.geocities.com/schmidtzoo/SNAK.index

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Diane~

Gosh! Your post sure reminded me of what my daughter went through for

a good 4 years. Does Kody have any blood disorders or bleeding

problems? My daughter would wake up almost every morning for weeks at

a time with the same exact blooding face, pillow and nose. She was

finally diagnosed with chronic ITP (low platelets) and when her

sinuses acted up the bleeded from her having ITP became 10 times as

bad. She's also severely anemic. Doctors didn't believe us at first

when we told them the amount of blood and we even started taking the

pillow case into them. They tried to tell us at first that she was

just picking her nose. As you know, that's WAY too much blood to have

just been from nose picking. Then again, all this was before they has

diagnosed her with ANYTHING and thought she was just *rare*.

She also had the icky sticky potty problem as well. We were referred

to the GI docs and they did an Endoscopy and found nothing. They

could never give us a reason for the potty problems. They took

samples and everything and nothing came of it.

Oddly enough, she suffered with the icky potty problem ALWAYS at the

same time her bleeding was worse. I wish I had more info to give you

but I just wanted you to know that after being put on steroids daily,

iron and IVIG the bleeding and icky potty has all been long gone ~

about a year or so now.

Hope your little guy feels better!

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Diane:

I have no personal experience with what you're describing but it does sound

like diarrhea that maybe squirts out (sorry!) when he strains or coughs or

something like that. That would account for him not " feeling " it. Maybe a

light version of a stomach virus? Are you having the bleeding checked? I had

a couple friends as a child who had copious nosebleeds and it was something

like some weak vessels in their nasal passages and if it happened too much

they had to have it cauterized? THat was a longggg time ago though, who knows

if my info is accurate. Hope he's better soon...

(mom to Kate, born 9/19/02; and , age 4 -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs)

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Diane:

I have no personal experience with what you're describing but it does sound

like diarrhea that maybe squirts out (sorry!) when he strains or coughs or

something like that. That would account for him not " feeling " it. Maybe a

light version of a stomach virus? Are you having the bleeding checked? I had

a couple friends as a child who had copious nosebleeds and it was something

like some weak vessels in their nasal passages and if it happened too much

they had to have it cauterized? THat was a longggg time ago though, who knows

if my info is accurate. Hope he's better soon...

(mom to Kate, born 9/19/02; and , age 4 -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs)

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In a message dated 2/13/2003 10:02:19 AM Eastern Standard Time,

bunneegirl@... writes:

> I have no personal experience with what you're describing but it does sound

> like diarrhea that maybe squirts out (sorry!) when he strains or coughs or

> something like that. That would account for him not " feeling " it. Maybe a

> light version of a stomach virus? Are you having the bleeding checked? I

> had

> a couple friends as a child who had copious nosebleeds and it was something

>

> like some weak vessels in their nasal passages and if it happened too much

> they had to have it cauterized? THat was a longggg time ago though, who

> knows

> if my info is accurate. Hope he's better soon...

>

No tummy virus. Weird, huh? but the bleeding is from what you described. Doc

said to put vaseline on a q-tip and rub the inside of his nose with it. And

if it keeps up they will cauterize it. Doc said good ol vaseline usually does

the trick though. I hope he is better soon too. He is very very embarassed

about it.

Diane, Mom to Kody age 7, Di Syndrome, Hypogammaglobulinemia, Epilepsy,

Asthma, CAPD, VID, Developemental Disorders, also Proud Mom to Arika 15,

Kaila 11, and Sami 9.

Visit my website at: www.geocities.com/schmidtzoo/SNAK.index

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In a message dated 2/13/2003 10:20:21 AM Eastern Standard Time,

SGrubb@... writes:

> When she calls me back I will relay what she has to say.

>

> Sharon

> Mom to 11 20

>

Thank you Sharon!!!! Kody's doctor said it isn't emotional either (usually

done for attention). We are doing the laxitive route, which has me a little

worried. I am thinking that his IVIG tomorrow could be a little exciting in

ways that we don't really want to experience....

Diane, Mom to Kody age 7, Di Syndrome, Hypogammaglobulinemia, Epilepsy,

Asthma, CAPD, VID, Developemental Disorders, also Proud Mom to Arika 15,

Kaila 11, and Sami 9.

Visit my website at: www.geocities.com/schmidtzoo/SNAK.index

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Re: Re: Groan

Diane:

I thought I would jump in on this one as my good friends daughter had a bought

of this " sticky " potty. It was a very trying time as she described it exactly

as you did. I know the doctor put her on Metamucil several times a day but I

really can't remember if this helped. I have placed a call to her because I

know this was a huge issue for her and I know she got it resolved eventually.

She said exactly what you did regarding the not knowing when it would happen and

the consistency. For the longest time they thought it was emotional , but I do

remember they ruled that possibility OUT! I remember her telling me it took

awhile to get to the bottom of it. When she calls me back I will relay what

she has to say.

Sharon

Mom to 11 20

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: /messages

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  • 6 years later...
Guest guest

Nic has officially entered into puberty............ugh!

I am NOT ready!!! He's 12 and still my little baby.....80)

Any advice......................................

Di

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Relax. You'll survive. He will want his privacy now, so let him have it.

granny

On Tue, Jul 7, 2009 at 11:26 AM, Di <drf218@...> wrote:

>

>

> Nic has officially entered into puberty............ugh!

> I am NOT ready!!! He's 12 and still my little baby.....80)

>

> Any advice......................................

> Di

>

>

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From: Di <drf218@...>

Subject: GROAN

" Upsndowns " < >

Date: Tuesday, July 7, 2009, 10:26 AM

Nic has officially entered into puberty..... .......ugh!

I am NOT ready!!! He's 12 and still my little baby.....80)

Any advice...... ......... ......... ......... .....

Di

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Di,

Our son, Bryson, has just turned 12. I'm not ready for hormones and

teenager-dom either. He's our oldest so it's all new to us. It's a small

comfort but I tell myself that it's " developmentally appropriate " for him to

push for independence. What I'm really not ready for is to share him

with...another woman! As he blew out his candles, his birthday wish was that

" na will love me " . {sigh} Right now I'm just trying to be grateful that

she likes him back!

>

> Nic has officially entered into puberty............ugh!

> I am NOT ready!!! He's 12 and still my little baby.....80)

>

> Any advice......................................

> Di

>

>

>

>

>

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Guest guest

Get Ready! is 13 and my only son. I was out of the house by the times my

brothers reached that age, so I had no idea at first what was going on with my

sweet guy. BUT....its been interesting. Just HOPE that he wants privacy! We

really had to work on " private time " with . But, he gets it now. My mom

asked me when had become so defiant with me, I said " When he hit puberty! "

Someone could have warned me that boys had the same moodiness and onery-ness

that girls that age have..lol...but we are surviving it..

, mom to 13 ds

From: drf218@...

Date: Tue, 7 Jul 2009 12:26:00 -0400

Subject: GROAN

Nic has officially entered into puberty............ugh!

I am NOT ready!!! He's 12 and still my little baby.....80)

Any advice......................................

Di

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Guest guest

LOL well should I say he " can't keep his hands off himself " .... and has no

shame in touching himself anywhere at any time......

another groan

Di

Re: GROAN

> Relax. You'll survive. He will want his privacy now, so let him have it.

>

> granny

>

> On Tue, Jul 7, 2009 at 11:26 AM, Di <drf218@...> wrote:

>

>>

>>

>> Nic has officially entered into puberty............ugh!

>> I am NOT ready!!! He's 12 and still my little baby.....80)

>>

>> Any advice......................................

>> Di

>>

>>

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Guest guest

When I would catch doing that I would tell her it was something she

should confine to the privacy of her bedroom where no one else could see

her. It took awhile, but she finally caught on.

granny

On Wed, Jul 8, 2009 at 7:28 AM, Di <drf218@...> wrote:

> LOL well should I say he " can't keep his hands off himself " .... and has no

> shame in touching himself anywhere at any time......

> another groan

>

> Di

>

>

>

> Re: GROAN

>

>

> Relax. You'll survive. He will want his privacy now, so let him have it.

>>

>> granny

>>

>> On Tue, Jul 7, 2009 at 11:26 AM, Di <drf218@...> wrote:

>>

>>

>>>

>>> Nic has officially entered into puberty............ugh!

>>> I am NOT ready!!! He's 12 and still my little baby.....80)

>>>

>>> Any advice......................................

>>> Di

>>>

>>>

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Guest guest

Ben is 16 and still does this. I keep telling him in his bedroom but many times

I just have to say " hands " and he will stop. I keep asking myself " when will it

end? " .

From: gem.bordages@...

Date: Wed, 8 Jul 2009 07:45:23 -0500

Subject: Re: GROAN

When I would catch doing that I would tell her it was something she

should confine to the privacy of her bedroom where no one else could see

her. It took awhile, but she finally caught on.

granny

On Wed, Jul 8, 2009 at 7:28 AM, Di <drf218@...> wrote:

> LOL well should I say he " can't keep his hands off himself " .... and has no

> shame in touching himself anywhere at any time......

> another groan

>

> Di

>

>

>

> Re: GROAN

>

>

> Relax. You'll survive. He will want his privacy now, so let him have it.

>>

>> granny

>>

>> On Tue, Jul 7, 2009 at 11:26 AM, Di <drf218@...> wrote:

>>

>>

>>>

>>> Nic has officially entered into puberty............ugh!

>>> I am NOT ready!!! He's 12 and still my little baby.....80)

>>>

>>> Any advice......................................

>>> Di

>>>

>>>

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Guest guest

It takes time with our guys. Just keep at it, . Eventually he will

learn.

granny

On Wed, Jul 8, 2009 at 9:38 AM, CINDY MATTERN <cindymattern@...> wrote:

>

>

>

> Ben is 16 and still does this. I keep telling him in his bedroom but many

> times I just have to say " hands " and he will stop. I keep asking myself

> " when will it end? " .

>

>

> <%40>

> From: gem.bordages@... <gem.bordages%40gmail.com>

> Date: Wed, 8 Jul 2009 07:45:23 -0500

> Subject: Re: GROAN

>

>

> When I would catch doing that I would tell her it was something she

> should confine to the privacy of her bedroom where no one else could see

> her. It took awhile, but she finally caught on.

>

> granny

>

> On Wed, Jul 8, 2009 at 7:28 AM, Di <drf218@...<drf218%40verizon.net>>

> wrote:

>

> > LOL well should I say he " can't keep his hands off himself " .... and has

> no

> > shame in touching himself anywhere at any time......

> > another groan

> >

> > Di

> >

> >

> >

> > Re: GROAN

> >

> >

> > Relax. You'll survive. He will want his privacy now, so let him have it.

> >>

> >> granny

> >>

> >> On Tue, Jul 7, 2009 at 11:26 AM, Di

<drf218@...<drf218%40verizon.net>>

> wrote:

> >>

> >>

> >>>

> >>> Nic has officially entered into puberty............ugh!

> >>> I am NOT ready!!! He's 12 and still my little baby.....80)

> >>>

> >>> Any advice......................................

> >>> Di

> >>>

> >>>

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Guest guest

I spent some time working in a group home and there was a man there that we

couldn't keep pants on. But we did try and direct him to his bedroom for alone

time.

For my sister - its like says 'hands' and she'll stop - for the moment. I

try to give her time alone in the bedroom before sleep.

My brother doesn't really seeem to notice. Even though he's gone through

puberty, he just doesn't seem to care. But like I've mentioned before there is a

cognitive difference between my siblings.

Neither really understand 'privacy' - shirts come off, pants come off at will.

We reinforce " no, you need to stay dressed now " or various other comments. But

its just a struggle. Repetition, consistency and positive rewards for good

behavior.

Personally, I try really hard not to say it or any part of their 'body' is bad

or sex is bad because even with the developmental delay, our DS adults are still

adults. Its challenging of course. Where to draw the line. My siblings are young

mentally. I can't imagine those that are dealing with their 'kids' dating!!

Hollie

________________________________

From: CINDY MATTERN <cindymattern@...>

gem.bordages@...; < >

Sent: Wednesday, July 8, 2009 9:38:04 AM

Subject: RE: GROAN

Ben is 16 and still does this. I keep telling him in his bedroom but many times

I just have to say " hands " and he will stop. I keep asking myself " when will it

end? " .

@grou ps.com

From: gem.bordages@ gmail.com

Date: Wed, 8 Jul 2009 07:45:23 -0500

Subject: Re: GROAN

When I would catch doing that I would tell her it was something she

should confine to the privacy of her bedroom where no one else could see

her. It took awhile, but she finally caught on.

granny

On Wed, Jul 8, 2009 at 7:28 AM, Di <drf218verizon (DOT) net> wrote:

> LOL well should I say he " can't keep his hands off himself " .... and has no

> shame in touching himself anywhere at any time......

> another groan

>

> Di

>

>

>

> Re: GROAN

>

>

> Relax. You'll survive. He will want his privacy now, so let him have it.

>>

>> granny

>>

>> On Tue, Jul 7, 2009 at 11:26 AM, Di <drf218verizon (DOT) net> wrote:

>>

>>

>>>

>>> Nic has officially entered into puberty..... .......ugh!

>>> I am NOT ready!!! He's 12 and still my little baby.....80)

>>>

>>> Any advice...... ......... ......... ......... .....

>>> Di

>>>

>>>

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Guest guest

I think with Nic (and I've posted this before in the " sit or stand to pee "

thread) his penis was extremely small b4, like the size of a pencil

eraser.....Now within a month or two it's typical size. He is fascinated

that there's something there now. He is even standing to pee!!

Di

Re: GROAN

>>

>>

>> Relax. You'll survive. He will want his privacy now, so let him have it.

>>>

>>> granny

>>>

>>> On Tue, Jul 7, 2009 at 11:26 AM, Di <drf218verizon (DOT) net> wrote:

>>>

>>>

>>>>

>>>> Nic has officially entered into puberty..... .......ugh!

>>>> I am NOT ready!!! He's 12 and still my little baby.....80)

>>>>

>>>> Any advice...... ......... ......... ......... .....

>>>> Di

>>>>

>>>>

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Guest guest

Has anyone heard anything about these 2 books, I am looking for books to use

with to discuss Sexuality since at 11yo he has also found his penis.

" Sexuality: Your Sons and Daughters With Intellectual Disabilities "

Karin Melberg Schwier

" Teaching Children with Down Syndrome about Their Bodies, Boundaries, and

Sexuality (Topics in Down Syndrome) "

Terri Couwenhoven

Thanks,

Marcia

holliej@...;

From: drf218@...

Date: Wed, 8 Jul 2009 14:41:25 -0400

Subject: Re: GROAN

I think with Nic (and I've posted this before in the " sit or stand to pee "

thread) his penis was extremely small b4, like the size of a pencil

eraser.....Now within a month or two it's typical size. He is fascinated

that there's something there now. He is even standing to pee!!

Di

Re: GROAN

>>

>>

>> Relax. You'll survive. He will want his privacy now, so let him have it.

>>>

>>> granny

>>>

>>> On Tue, Jul 7, 2009 at 11:26 AM, Di <drf218verizon (DOT) net> wrote:

>>>

>>>

>>>>

>>>> Nic has officially entered into puberty..... .......ugh!

>>>> I am NOT ready!!! He's 12 and still my little baby.....80)

>>>>

>>>> Any advice...... ......... ......... ......... .....

>>>> Di

>>>>

>>>>

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Guest guest

both of the books are good.

what exactly do you want to know about them?

dave hingsburger also has a few excellent books to the topic

gundula

Has anyone heard anything about these 2 books, I am looking for books to use

with to discuss Sexuality since at 11yo he has also found his penis.

" Sexuality: Your Sons and Daughters With Intellectual Disabilities "

Karin Melberg Schwier

" Teaching Children with Down Syndrome about Their Bodies, Boundaries, and

Sexuality (Topics in Down Syndrome) "

Terri Couwenhoven

Thanks,

Marcia

.

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Guest guest

I'm wondering if they can explain sexuality to a child with DS in a way that is

able to be understood. Also if the books will explain to me how a person with DS

might handle/process puberty. Things like: Do they have a stronger sexual urge

than someone else? Is there a stronger pull to Sex because they have DS? Some

information is for legal purposes but basically I need to find out if a child

with DS process sexuality/puberty differently than a child without DS.

From: GundulaME@...

Date: Wed, 8 Jul 2009 12:55:06 -0700

Subject: Re: GROAN

both of the books are good.

what exactly do you want to know about them?

dave hingsburger also has a few excellent books to the topic

gundula

Has anyone heard anything about these 2 books, I am looking for books to use

with to discuss Sexuality since at 11yo he has also found his penis.

" Sexuality: Your Sons and Daughters With Intellectual Disabilities "

Karin Melberg Schwier

" Teaching Children with Down Syndrome about Their Bodies, Boundaries, and

Sexuality (Topics in Down Syndrome) "

Terri Couwenhoven

Thanks,

Marcia

..

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Guest guest

I catch with her fingers in her panties still. I ask her what she's doing

and she stops and says " nothing " . I don't fuss at her because I don't want to

make her feel bad about herself, but I do tell her she needs to wash her hands

first...which totally throws her because she is not about to get up and go

wash her hands.  It used to be bad enough she would get a yeast infection. 

I put in her IEP when she was 5 to start talking about " private parts " so she

would get the learning reinforcement at school. We have been talking about

private parts and what they are for, and hopefully it is sinking in.  Lately, I

have been putting on little white undershirts underneath her tank tops because

her torso is short and her boobs (or lack there off) were showing.  She had a

habit of fooling around with her shirt, sometimes lifting it up too high and we

had the " boobie talk " .  I am pretty sure she understood (we talk about it

usually once a week)

because yesterday I had on a tank top that had a little cleavage, and she

said...mom, we can see your boobies!  No one is supposed to see your boobies, do

you need a white shirt like me?

This was at the store...gotta love her!!

Both of my boys (11 and 13) are in puberty.  A year ago I went online and read

as much as I could about boys, since I'm not one and their dad flat out told me

he wouldn't talk to them about it.  I have told them exactly what you all

have...it's private and should be don in the bathroom or in your room with the

door shut...they are plain old boys, no delays...but I was glad I did the

research!

Good luck!!

  Moyers

Kay Independent Beauty Consultant

832-816-7992

www.marykay.com/jendmoyers

________________________________

From: Hollie <holliej@...>

Sent: Wednesday, July 8, 2009 10:34:17 AM

Subject: Re: GROAN

I spent some time working in a group home and there was a man there that we

couldn't keep pants on. But we did try and direct him to his bedroom for alone

time.

For my sister - its like says 'hands' and she'll stop - for the moment. I

try to give her time alone in the bedroom before sleep.

My brother doesn't really seeem to notice. Even though he's gone through

puberty, he just doesn't seem to care. But like I've mentioned before there is a

cognitive difference between my siblings.

Neither really understand 'privacy' - shirts come off, pants come off at will.

We reinforce " no, you need to stay dressed now " or various other comments. But

its just a struggle. Repetition, consistency and positive rewards for good

behavior.

Personally, I try really hard not to say it or any part of their 'body' is bad

or sex is bad because even with the developmental delay, our DS adults are still

adults. Its challenging of course. Where to draw the line. My siblings are young

mentally. I can't imagine those that are dealing with their 'kids' dating!!

Hollie

____________ _________ _________ __

From: CINDY MATTERN <cindymattern@ msn.com>

gem.bordages@ gmail.com; <@grou ps.com>

Sent: Wednesday, July 8, 2009 9:38:04 AM

Subject: RE: GROAN

Ben is 16 and still does this. I keep telling him in his bedroom but many times

I just have to say " hands " and he will stop. I keep asking myself " when will it

end? " .

@grou ps.com

From: gem.bordages@ gmail.com

Date: Wed, 8 Jul 2009 07:45:23 -0500

Subject: Re: GROAN

When I would catch doing that I would tell her it was something she

should confine to the privacy of her bedroom where no one else could see

her. It took awhile, but she finally caught on.

granny

On Wed, Jul 8, 2009 at 7:28 AM, Di <drf218verizon (DOT) net> wrote:

> LOL well should I say he " can't keep his hands off himself " .... and has no

> shame in touching himself anywhere at any time......

> another groan

>

> Di

>

>

>

> Re: GROAN

>

>

> Relax. You'll survive. He will want his privacy now, so let him have it.

>>

>> granny

>>

>> On Tue, Jul 7, 2009 at 11:26 AM, Di <drf218verizon (DOT) net> wrote:

>>

>>

>>>

>>> Nic has officially entered into puberty..... .......ugh!

>>> I am NOT ready!!! He's 12 and still my little baby.....80)

>>>

>>> Any advice...... ......... ......... ......... .....

>>> Di

>>>

>>>

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Guest guest

I have Teaching Down syndrome children about their bodies, etc.  It is a good

book.  Woodbine house, in my opinion, has some of the best books.  is 7,

but I am glad I have it.

  Moyers

Kay Independent Beauty Consultant

832-816-7992

www.marykay.com/jendmoyers

________________________________

From: Marcia Loomas <mloomas@...>

drf218@...; holliej@...; Upsndowns < >

Sent: Wednesday, July 8, 2009 2:34:42 PM

Subject: RE: GROAN

Has anyone heard anything about these 2 books, I am looking for books to use

with to discuss Sexuality since at 11yo he has also found his penis.

" Sexuality: Your Sons and Daughters With Intellectual Disabilities "

Karin Melberg Schwier

" Teaching Children with Down Syndrome about Their Bodies, Boundaries, and

Sexuality (Topics in Down Syndrome) "

Terri Couwenhoven

Thanks,

Marcia

holliej (DOT) com; @grou ps.com

From: drf218verizon (DOT) net

Date: Wed, 8 Jul 2009 14:41:25 -0400

Subject: Re: GROAN

I think with Nic (and I've posted this before in the " sit or stand to pee "

thread) his penis was extremely small b4, like the size of a pencil

eraser.....Now within a month or two it's typical size. He is fascinated

that there's something there now. He is even standing to pee!!

Di

Re: GROAN

>>

>>

>> Relax. You'll survive. He will want his privacy now, so let him have it.

>>>

>>> granny

>>>

>>> On Tue, Jul 7, 2009 at 11:26 AM, Di <drf218verizon (DOT) net> wrote:

>>>

>>>

>>>>

>>>> Nic has officially entered into puberty..... .......ugh!

>>>> I am NOT ready!!! He's 12 and still my little baby.....80)

>>>>

>>>> Any advice...... ......... ......... ......... .....

>>>> Di

>>>>

>>>>

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