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Since Katy was very young (she is now 14) - when she gets excited about

something, she will flap her hands back and forth really fast - it is kind of

hard to describe, but her arms are going straight out (not up) and her hands are

going. As soon as I just touch her hands, she stops, but we can be at the

movies or just at home and something funny or exciting and she will flap her

hands. I can give her a quick verbal cue or physical cue by just touching her

hands and she will stop.

With her speech, sometimes she has a hard time getting certain words out or will

stutter. However, when she sings - she NEVER stutters or has problems with

words. Her piano teacher will sometimes put on a prerecorded song on the

digital piano, and she will sing and sing and just make up the words as she goes

along - and never stutter.

As for adverse behaviors, she has really been as easy child. I cannot remember

one time she ever threw a fit, she never bit anyone and is not a hitter at all.

She hardly even cries about anything. Early on, we disciplined her the same as

our son - made sure she understood why she was being disciplined (which was

usually pops with a designated paddle) and always disciplined in love. She

responded very well to discipline and hardly got pops at all.

Please don't think she is a perfect child - she's definitely has her

stubbornness at times, but just being firm with her usually gets her past it -

sometimes she just has to talk it out with herself - she does self-talk a lot in

her room.

Also something else that I know has helped with her behavior, as with any child,

is her response to the Word of God. I have taught her Bible lessons since very

early. As soon as she became God conscious, she did believe on the Lord Jesus

Christ as her Savior. When it comes to learning God's Word, there is no

handicap - your human IQ is no handicap. God in his Grace has provided a way

for anyone, regardless of IQ, to learn his Word. One of the very basic

principles was " Children, Obey your parents in the Lord, for this right. " Eph.

6:1 - The principle of Volition, she has freewill and can choose " yes " or " no "

- all of these concepts were taught with lots of visuals and hands-on

manipulative. Right now, we are studying Moses and the children of Israel and

not being a grumbler. Sometimes, Katy doesn't want to go to her piano lesson

and we start talking about our lessons in Moses and then she can apply what she

has learned to her own attitude about piano lessons. It really does turn things

around.

Not trying to get preachy here but God's Word is alive and powerful and it does

make a difference in the lives of our children.

Charlotte

Concerning Behaviors

Hi Everyone,

I was wondering if you could characterize some specific behaviors in your

child with MDS. I know that frustration builds when there is a delay in

communication, and that often causes the child to lash out by hitting, biting,

or thowing a fit. (perhaps you can include your input on that)

Also, as I wrote in our last newsletter, Wandering is a big issue with

children with MDS.

Are there other specific behaviors that you are dealing with or have dealt

with? And, what age is or has your child exhibited this behavior?

Thanks

Kristy

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Collin when he gets fustrated or angrey will start to flap his hands and

arms and shake. It is very scary to people who first meet him and see this.

Collin started doing this when he was about 3, he is now 5 and still does

it. The only thing that helps to stop this is to calm him down by TRYING to

figure out what happened in the first place.

~Nikki

Mother of Collin MDS 5yrs old

>

>Reply-To: MosaicDS

>To: <MosaicDS >

>Subject: Re: Concerning Behaviors

>Date: Tue, 7 Mar 2006 08:22:06 -0600

>

>Since Katy was very young (she is now 14) - when she gets excited about

>something, she will flap her hands back and forth really fast - it is kind

>of hard to describe, but her arms are going straight out (not up) and her

>hands are going. As soon as I just touch her hands, she stops, but we can

>be at the movies or just at home and something funny or exciting and she

>will flap her hands. I can give her a quick verbal cue or physical cue by

>just touching her hands and she will stop.

>

>With her speech, sometimes she has a hard time getting certain words out or

>will stutter. However, when she sings - she NEVER stutters or has problems

>with words. Her piano teacher will sometimes put on a prerecorded song on

>the digital piano, and she will sing and sing and just make up the words as

>she goes along - and never stutter.

>

>As for adverse behaviors, she has really been as easy child. I cannot

>remember one time she ever threw a fit, she never bit anyone and is not a

>hitter at all. She hardly even cries about anything. Early on, we

>disciplined her the same as our son - made sure she understood why she was

>being disciplined (which was usually pops with a designated paddle) and

>always disciplined in love. She responded very well to discipline and

>hardly got pops at all.

>

>Please don't think she is a perfect child - she's definitely has her

>stubbornness at times, but just being firm with her usually gets her past

>it - sometimes she just has to talk it out with herself - she does

>self-talk a lot in her room.

>

>Also something else that I know has helped with her behavior, as with any

>child, is her response to the Word of God. I have taught her Bible lessons

>since very early. As soon as she became God conscious, she did believe on

>the Lord Jesus Christ as her Savior. When it comes to learning God's Word,

>there is no handicap - your human IQ is no handicap. God in his Grace has

>provided a way for anyone, regardless of IQ, to learn his Word. One of the

>very basic principles was " Children, Obey your parents in the Lord, for

>this right. " Eph. 6:1 - The principle of Volition, she has freewill and

>can choose " yes " or " no " - all of these concepts were taught with lots of

>visuals and hands-on manipulative. Right now, we are studying Moses and

>the children of Israel and not being a grumbler. Sometimes, Katy doesn't

>want to go to her piano lesson and we start talking about our lessons in

>Moses and then she can apply what she has learned to her own attitude about

>piano lessons. It really does turn things around.

>

>Not trying to get preachy here but God's Word is alive and powerful and it

>does make a difference in the lives of our children.

>

>Charlotte

>

> Concerning Behaviors

>

>

> Hi Everyone,

> I was wondering if you could characterize some specific behaviors in

>your child with MDS. I know that frustration builds when there is a delay

>in communication, and that often causes the child to lash out by hitting,

>biting, or thowing a fit. (perhaps you can include your input on that)

> Also, as I wrote in our last newsletter, Wandering is a big issue with

>children with MDS.

> Are there other specific behaviors that you are dealing with or have

>dealt with? And, what age is or has your child exhibited this behavior?

>

> Thanks

> Kristy

>

>

>

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Tim flaps his hands when he is excited. This is interesting that you both have

mentioned hand flapping. Is this something all of the kids with MDS do?

Kristy

Walton wrote:

Collin when he gets fustrated or angrey will start to flap his hands and

arms and shake. It is very scary to people who first meet him and see this.

Collin started doing this when he was about 3, he is now 5 and still does

it. The only thing that helps to stop this is to calm him down by TRYING to

figure out what happened in the first place.

~Nikki

Mother of Collin MDS 5yrs old

>

>Reply-To: MosaicDS

>To: <MosaicDS >

>Subject: Re: Concerning Behaviors

>Date: Tue, 7 Mar 2006 08:22:06 -0600

>

>Since Katy was very young (she is now 14) - when she gets excited about

>something, she will flap her hands back and forth really fast - it is kind

>of hard to describe, but her arms are going straight out (not up) and her

>hands are going. As soon as I just touch her hands, she stops, but we can

>be at the movies or just at home and something funny or exciting and she

>will flap her hands. I can give her a quick verbal cue or physical cue by

>just touching her hands and she will stop.

>

>With her speech, sometimes she has a hard time getting certain words out or

>will stutter. However, when she sings - she NEVER stutters or has problems

>with words. Her piano teacher will sometimes put on a prerecorded song on

>the digital piano, and she will sing and sing and just make up the words as

>she goes along - and never stutter.

>

>As for adverse behaviors, she has really been as easy child. I cannot

>remember one time she ever threw a fit, she never bit anyone and is not a

>hitter at all. She hardly even cries about anything. Early on, we

>disciplined her the same as our son - made sure she understood why she was

>being disciplined (which was usually pops with a designated paddle) and

>always disciplined in love. She responded very well to discipline and

>hardly got pops at all.

>

>Please don't think she is a perfect child - she's definitely has her

>stubbornness at times, but just being firm with her usually gets her past

>it - sometimes she just has to talk it out with herself - she does

>self-talk a lot in her room.

>

>Also something else that I know has helped with her behavior, as with any

>child, is her response to the Word of God. I have taught her Bible lessons

>since very early. As soon as she became God conscious, she did believe on

>the Lord Jesus Christ as her Savior. When it comes to learning God's Word,

>there is no handicap - your human IQ is no handicap. God in his Grace has

>provided a way for anyone, regardless of IQ, to learn his Word. One of the

>very basic principles was " Children, Obey your parents in the Lord, for

>this right. " Eph. 6:1 - The principle of Volition, she has freewill and

>can choose " yes " or " no " - all of these concepts were taught with lots of

>visuals and hands-on manipulative. Right now, we are studying Moses and

>the children of Israel and not being a grumbler. Sometimes, Katy doesn't

>want to go to her piano lesson and we start talking about our lessons in

>Moses and then she can apply what she has learned to her own attitude about

>piano lessons. It really does turn things around.

>

>Not trying to get preachy here but God's Word is alive and powerful and it

>does make a difference in the lives of our children.

>

>Charlotte

>

> Concerning Behaviors

>

>

> Hi Everyone,

> I was wondering if you could characterize some specific behaviors in

>your child with MDS. I know that frustration builds when there is a delay

>in communication, and that often causes the child to lash out by hitting,

>biting, or thowing a fit. (perhaps you can include your input on that)

> Also, as I wrote in our last newsletter, Wandering is a big issue with

>children with MDS.

> Are there other specific behaviors that you are dealing with or have

>dealt with? And, what age is or has your child exhibited this behavior?

>

> Thanks

> Kristy

>

>

>

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Kristy -

does not flap; however she is stubborn ( " like mule " we say to her).

She will pretend to not hear you if she does not want to do what you are

telling her to do. Because she doesn't talk, her teachers sometimes assume

she does not understand. But she does, she will manipulate the adults in

her life to do the things she does not want to do (like cutting or writing

or flopping on the couch at bed time because she knows I can't lift her) and

she is too adorable when she does want to do something. She knows how to

manipulate people and she is rather good at it.

When she is angry or upset she will cry; she will cry if she gets yelled

at. She will cry if she is trying to tell you something and you don't

understand. She will also cry if her brother gets yelled at. She doesn't

like anyone getting in trouble (even the pets).

is chaos in motion, she feels a need to dump out any container she

finds with anything in it. Cleaning up only if I turn off the TV until it

is cleaned up.

Darlene - mom to (9) and (7)

>

> Tim flaps his hands when he is excited. This is interesting that you both

> have mentioned hand flapping. Is this something all of the kids with MDS do?

> Kristy

>

> Walton wrote:

> Collin when he gets fustrated or angrey will start to flap his hands and

> arms and shake. It is very scary to people who first meet him and see

> this.

> Collin started doing this when he was about 3, he is now 5 and still does

> it. The only thing that helps to stop this is to calm him down by TRYING

> to

> figure out what happened in the first place.

>

> ~Nikki

> Mother of Collin MDS 5yrs old

>

>

> >

> >Reply-To: MosaicDS

> >To: <MosaicDS >

> >Subject: Re: Concerning Behaviors

> >Date: Tue, 7 Mar 2006 08:22:06 -0600

> >

> >Since Katy was very young (she is now 14) - when she gets excited about

> >something, she will flap her hands back and forth really fast - it is

> kind

> >of hard to describe, but her arms are going straight out (not up) and her

> >hands are going. As soon as I just touch her hands, she stops, but we

> can

> >be at the movies or just at home and something funny or exciting and she

> >will flap her hands. I can give her a quick verbal cue or physical cue

> by

> >just touching her hands and she will stop.

> >

> >With her speech, sometimes she has a hard time getting certain words out

> or

> >will stutter. However, when she sings - she NEVER stutters or has

> problems

> >with words. Her piano teacher will sometimes put on a prerecorded song

> on

> >the digital piano, and she will sing and sing and just make up the words

> as

> >she goes along - and never stutter.

> >

> >As for adverse behaviors, she has really been as easy child. I cannot

> >remember one time she ever threw a fit, she never bit anyone and is not a

> >hitter at all. She hardly even cries about anything. Early on, we

> >disciplined her the same as our son - made sure she understood why she

> was

> >being disciplined (which was usually pops with a designated paddle) and

> >always disciplined in love. She responded very well to discipline and

> >hardly got pops at all.

> >

> >Please don't think she is a perfect child - she's definitely has her

> >stubbornness at times, but just being firm with her usually gets her past

> >it - sometimes she just has to talk it out with herself - she does

> >self-talk a lot in her room.

> >

> >Also something else that I know has helped with her behavior, as with any

> >child, is her response to the Word of God. I have taught her Bible

> lessons

> >since very early. As soon as she became God conscious, she did believe

> on

> >the Lord Jesus Christ as her Savior. When it comes to learning God's

> Word,

> >there is no handicap - your human IQ is no handicap. God in his Grace

> has

> >provided a way for anyone, regardless of IQ, to learn his Word. One of

> the

> >very basic principles was " Children, Obey your parents in the Lord, for

> >this right. " Eph. 6:1 - The principle of Volition, she has freewill and

> >can choose " yes " or " no " - all of these concepts were taught with lots of

> >visuals and hands-on manipulative. Right now, we are studying Moses and

> >the children of Israel and not being a grumbler. Sometimes, Katy doesn't

> >want to go to her piano lesson and we start talking about our lessons in

> >Moses and then she can apply what she has learned to her own attitude

> about

> >piano lessons. It really does turn things around.

> >

> >Not trying to get preachy here but God's Word is alive and powerful and

> it

> >does make a difference in the lives of our children.

> >

> >Charlotte

> >

> > Concerning Behaviors

> >

> >

> > Hi Everyone,

> > I was wondering if you could characterize some specific behaviors in

> >your child with MDS. I know that frustration builds when there is a delay

> >in communication, and that often causes the child to lash out by hitting,

> >biting, or thowing a fit. (perhaps you can include your input on that)

> > Also, as I wrote in our last newsletter, Wandering is a big issue

> with

> >children with MDS.

> > Are there other specific behaviors that you are dealing with or have

> >dealt with? And, what age is or has your child exhibited this behavior?

> >

> > Thanks

> > Kristy

> >

> >

> >

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I think it must be something all kids with MDS and DS do!

Thanks,

Kim

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Tim flaps his hands when he is excited. This is interesting that you

both have mentioned hand flapping. Is this something all of the kids

with MDS do?

  Kristy

Walton wrote:

  Collin when he gets fustrated or angrey will start to flap his hands

and

arms and shake. It is very scary to people who first meet him and see

this.

Collin started doing this when he was about 3, he is now 5 and still

does

it. The only thing that helps to stop this is to calm him down by

TRYING to

figure out what happened in the first place.

~Nikki

Mother of Collin MDS 5yrs old

>

>Reply-To: MosaicDS

>To: <MosaicDS >

>Subject: Re: Concerning Behaviors

>Date: Tue, 7 Mar 2006 08:22:06 -0600

>

>Since Katy was very young (she is now 14) - when she gets excited

about

>something, she will flap her hands back and forth really fast - it is

kind

>of hard to describe, but her arms are going straight out (not up) and

her

>hands are going.  As soon as I just touch her hands, she stops, but

we can

>be at the movies or just at home and something funny or exciting and

she

>will flap her hands.  I can give her a quick verbal cue or physical

cue by

>just touching her hands and she will stop.

>

>With her speech, sometimes she has a hard time getting certain words

out or

>will stutter.  However, when she sings - she NEVER stutters or has

problems

>with words.  Her piano teacher will sometimes put on a prerecorded

song on

>the digital piano, and she will sing and sing and just make up the

words as

>she goes along - and never stutter.

>

>As for adverse behaviors, she has really been as easy child.  I cannot

>remember one time she ever threw a fit, she never bit anyone and is

not a

>hitter at all.  She hardly even cries about anything.  Early on, we

>disciplined her the same as our son - made sure she understood why

she was

>being disciplined (which was usually pops with a designated paddle)

and

>always disciplined in love.  She responded very well to discipline and

>hardly got pops at all.

>

>Please don't think she is a perfect child - she's definitely has her

>stubbornness at times, but just being firm with her usually gets her

past

>it - sometimes she just has to talk it out with herself - she does

>self-talk a lot in her room.

>

>Also something else that I know has helped with her behavior, as with

any

>child, is her response to the Word of God.  I have taught her Bible

lessons

>since very early.  As soon as she became God conscious, she did

believe on

>the Lord Jesus Christ as her Savior.  When it comes to learning God's

Word,

>there is no handicap - your human IQ is no handicap.  God in his

Grace has

>provided a way for anyone, regardless of IQ, to learn his Word.  One

of the

>very basic principles was " Children, Obey your parents in the Lord,

for

>this right. "   Eph. 6:1  - The principle of Volition, she has freewill

and

>can choose " yes " or " no " - all of these concepts were taught with

lots of

>visuals and hands-on manipulative.  Right now, we are studying Moses

and

>the children of Israel and not being a grumbler.  Sometimes, Katy

doesn't

>want to go to her piano lesson and we start talking about our lessons

in

>Moses and then she can apply what she has learned to her own attitude

about

>piano lessons.  It really does turn things around.

>

>Not trying to get preachy here but God's Word is alive and powerful

and it

>does make a difference in the lives of our children.

>

>Charlotte

>

>   Concerning Behaviors

>

>

>   Hi Everyone,

>     I was wondering if you could characterize some specific

behaviors in

>your child with MDS. I know that frustration builds when there is a

delay

>in communication, and that often causes the child to lash out by

hitting,

>biting, or thowing a fit. (perhaps you can include your input on that)

>     Also, as I wrote in our last newsletter, Wandering is a big

issue with

>children with MDS.

>     Are there other specific behaviors that you are dealing with or

have

>dealt with? And, what age is or has your child exhibited this

behavior?

>

>     Thanks

>     Kristy

>

>

>  

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Kristy:

Maitlan does not flap his hands. He is more like he pretends he did not

hear you. He also crys a lot when he is upset.

, Mellissa 22, Morghan 19, 16, Maitlan (mds) 3, Mcklaine 9

months

--

Thanks, Tacy

www.cwlight.com/asap

www.alwaysspecialandpersonal.com

--------- Concerning Behaviors

> >

> >

> > Hi Everyone,

> > I was wondering if you could characterize some specific behaviors in

> >your child with MDS. I know that frustration builds when there is a delay

> >in communication, and that often causes the child to lash out by hitting,

> >biting, or thowing a fit. (perhaps you can include your input on that)

> > Also, as I wrote in our last newsletter, Wandering is a big issue

> with

> >children with MDS.

> > Are there other specific behaviors that you are dealing with or have

> >dealt with? And, what age is or has your child exhibited this behavior?

> >

> > Thanks

> > Kristy

> >

> >

> >

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Guest guest

Hmm... I don't consider it too 'concerning', but , 13, like, was it

Nat?, has a whole cast and crew of imaginary friends, names and all, and he has

very animated, lively conversations with them. For the most part, he does

control this in public, and in the classroom as far as I know, but at home, when

he

can go alone into his room, he really lets go!! I've seen him start to

get into it in the car when we're all driving, and we just have to remind him to

" turn the volume down " on his " friends " and sound effects, and you can tell

he was in his own lil world and didn't realize he was doing it that loudly!

~ANGEL~

Mom to (13) Mosaic Down Syndrome/Hirschsprung's Disease

and

Lance (17), Tyler (14), (11)

Jaeda (9) and Shayne (3)

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Nat isn't a flapper either. So, I think this is a behavior that can occur.

Now, Nat is a thumb sucker and talks out loud to himself and his imaginary

friends!! It is challenging, at times, to see the reactions of others seeing an

11yo who is almost 5' tall sucking his thumb and having a delightful

conversation with himself!! LOL!!

He, too, is my easier one to discipline. He does need a lot of reminding, as

his short term memory is horrible.

I also agree with Charlotte that Nat understand's the Kingdom of God so much

better than I probably will ever be able. He is able to love with such a pure

and innocent heart. For example, on Sunday, when the collection plate was being

passed, he realized that is 4 other sibs didn't have any money, (dad was in the

vestible with the 2yo!!). Nat generously went into his pocket and brought out 4

quarters, the last of his money for the rest of the month, and gladly gave it up

so that they would be able to have collection money. Needless to say, I was a

bit misty-eyed!!!

One thing that is difficult, at times, is trying to find a gift that is age

appropriate, yet he'd like. It is difficult to find Bob the Builder or Dora

stuff for an 11yo!! It gets challenging. However, he is a guy with very simple

tastes, cars, music ,swings, and cheeseburgers!!! :)

Irene who now is in Houston, (partially thanks to Kristy!!!! LOL!!!)

and mom to Nat 11 MDS, Luke 9, Emilia 7, Lillian 4, and Ikey 2

Kristy Colvin wrote:

Hi Everyone,

I was wondering if you could characterize some specific behaviors in your child

with MDS. I know that frustration builds when there is a delay in communication,

and that often causes the child to lash out by hitting, biting, or thowing a

fit. (perhaps you can include your input on that)

Also, as I wrote in our last newsletter, Wandering is a big issue with children

with MDS.

Are there other specific behaviors that you are dealing with or have dealt with?

And, what age is or has your child exhibited this behavior?

Thanks

Kristy

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Guest guest

Wow my son does it too! My daughter does it as well and she doesn't have

mds, but she may be copying her brother.

This is interesting. Brannon was the first child I ever seen do this.

a and

Brannon 5 w/mds and Gabby 4

-- Re: Concerning Behaviors

>Date: Tue, 7 Mar 2006 08:22:06 -0600

>

>Since Katy was very young (she is now 14) - when she gets excited about

>something, she will flap her hands back and forth really fast - it is kind

>of hard to describe, but her arms are going straight out (not up) and her

>hands are going. As soon as I just touch her hands, she stops, but we can

>be at the movies or just at home and something funny or exciting and she

>will flap her hands. I can give her a quick verbal cue or physical cue by

>just touching her hands and she will stop.

>

>With her speech, sometimes she has a hard time getting certain words out or

>will stutter. However, when she sings - she NEVER stutters or has problems

>with words. Her piano teacher will sometimes put on a prerecorded song on

>the digital piano, and she will sing and sing and just make up the words as

>she goes along - and never stutter.

>

>As for adverse behaviors, she has really been as easy child. I cannot

>remember one time she ever threw a fit, she never bit anyone and is not a

>hitter at all. She hardly even cries about anything. Early on, we

>disciplined her the same as our son - made sure she understood why she was

>being disciplined (which was usually pops with a designated paddle) and

>always disciplined in love. She responded very well to discipline and

>hardly got pops at all.

>

>Please don't think she is a perfect child - she's definitely has her

>stubbornness at times, but just being firm with her usually gets her past

>it - sometimes she just has to talk it out with herself - she does

>self-talk a lot in her room.

>

>Also something else that I know has helped with her behavior, as with any

>child, is her response to the Word of God. I have taught her Bible lessons

>since very early. As soon as she became God conscious, she did believe on

>the Lord Jesus Christ as her Savior. When it comes to learning God's Word,

>there is no handicap - your human IQ is no handicap. God in his Grace has

>provided a way for anyone, regardless of IQ, to learn his Word. One of the

>very basic principles was " Children, Obey your parents in the Lord, for

>this right. " Eph. 6:1 - The principle of Volition, she has freewill and

>can choose " yes " or " no " - all of these concepts were taught with lots of

>visuals and hands-on manipulative. Right now, we are studying Moses and

>the children of Israel and not being a grumbler. Sometimes, Katy doesn't

>want to go to her piano lesson and we start talking about our lessons in

>Moses and then she can apply what she has learned to her own attitude about

>piano lessons. It really does turn things around.

>

>Not trying to get preachy here but God's Word is alive and powerful and it

>does make a difference in the lives of our children.

>

>Charlotte

>

> Concerning Behaviors

>

>

> Hi Everyone,

> I was wondering if you could characterize some specific behaviors in

>your child with MDS. I know that frustration builds when there is a delay

>in communication, and that often causes the child to lash out by hitting,

>biting, or thowing a fit. (perhaps you can include your input on that)

> Also, as I wrote in our last newsletter, Wandering is a big issue with

>children with MDS.

> Are there other specific behaviors that you are dealing with or have

>dealt with? And, what age is or has your child exhibited this behavior?

>

> Thanks

> Kristy

>

>

>

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Aidan doesn't do the hand flapping, but he'll do this funny laughing/screaming

thing when he gets excited that is really hard to tone down because it's so

loud. Gets us a lot of irritating looks. but

Let's see, he wanders off and has ever since he learned how to walk. Lately,

now that his sister is 2 we can sometimes distract him by holding her hand and

being the big brother (he LOVES to take charge and take care of her). He throws

tantrums, mostly when he gets tired, which is still more often than most kids

his age, or he acts like he can't hear you when he doesn't want to do something.

He goes to school 4 days out of the week and doesn't get a nap those days, which

completely wears him out. I think all the school activities, thinking,

interacting, etc. makes him tire easily. His tantrums are more like a 2-year

old where he throws himself down on the ground and screams.

One of the behavior things that I'm curious about lately is a lack of

inhibitions when it comes to personal space. He often touches people he doesn't

know - he'll go up to strangers and " spank " them and laugh, which makes for a

lot of uncomfortable and annoyed responses. Or he'll reach out and stroke their

arm (the way you'd do if you were trying to give someone sympathy). He also

likes to take his clothes off and run around naked, but we can't figure out how

to get through to him that these kind of behaviors are generally considered

inappropriate. I get frustrated, not wanting people to think he's " weird "

because he's my sweet little Aidan, but I have no idea how to deal with this

one. I have no idea where it even comes from! I understand kids at this age

and exploring their bodies (he's almost 4), but there has to be a line for them

to function in society. Any thoughts?

Aidan 3 1/2 (MDS), a 2, 1 month

Kristy Colvin wrote:

Hi Everyone,

I was wondering if you could characterize some specific behaviors in your

child with MDS. I know that frustration builds when there is a delay in

communication, and that often causes the child to lash out by hitting, biting,

or thowing a fit. (perhaps you can include your input on that)

Also, as I wrote in our last newsletter, Wandering is a big issue with

children with MDS.

Are there other specific behaviors that you are dealing with or have dealt

with? And, what age is or has your child exhibited this behavior?

Thanks

Kristy

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I forgot to mention that Aidan also sings much better than he talks. He can

memorize whole songs and I understand them much better than when he's telling me

something. I always found this interesting, and even more so now that I've read

someone else has a child that does that. There must be something to music.

Aidan 3 1/2 (MDS), a 2, 1 month

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

Brings words and photos together (easily) with

PhotoMail - it's free and works with Yahoo! Mail.

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Craig does " something " with his hands also though not really flapping. He

puts his hands near his face under his chin and with a couple of the fingers

folded in wiggles the remainder of them rapidly with his face slightly bent.

We currently have aggression behavior (some yelling and swearing and some

foot kicking or fist or elbow pounding) whenever he doesn't want

instruction/guidance or is transitioning from one activity to another even

when its something he wants to do.

Terry, mom to Craig 17mds

Concerning Behaviors

>>

>>

>> Hi Everyone,

>> I was wondering if you could characterize some specific behaviors in

>>your child with MDS. I know that frustration builds when there is a delay

>>in communication, and that often causes the child to lash out by hitting,

>>biting, or thowing a fit. (perhaps you can include your input on that)

>> Also, as I wrote in our last newsletter, Wandering is a big issue

>> with

>>children with MDS.

>> Are there other specific behaviors that you are dealing with or have

>>dealt with? And, what age is or has your child exhibited this behavior?

>>

>> Thanks

>> Kristy

>>

>>

>>

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Terry,

Has Craig been diagnosed with Autism or does he have " Autistic Tendencies " ?

Tim has Asperger syndrome, so I was wondering about Craig.

Before he transitions, does he get warnings? I have always had to warn Tim

before he has to change to something else. (15 min...10 min..5 min) This has

always helped him to transition to other things. Also, he tends to get real

upset if I ask him to do something and then when he is through I ask him to do

something else! He thinks I am trying to trick him I guess. He always asks me

why I didn't tell him that at first. So...this is something new with him. I have

always been used to having to tell him things step by step and now he wants all

the details at once! LOL Time for me to change some I guess!

Kristy

Terry Van Evera wrote:

Craig does " something " with his hands also though not really flapping. He

puts his hands near his face under his chin and with a couple of the fingers

folded in wiggles the remainder of them rapidly with his face slightly bent.

We currently have aggression behavior (some yelling and swearing and some

foot kicking or fist or elbow pounding) whenever he doesn't want

instruction/guidance or is transitioning from one activity to another even

when its something he wants to do.

Terry, mom to Craig 17mds

Concerning Behaviors

>>

>>

>> Hi Everyone,

>> I was wondering if you could characterize some specific behaviors in

>>your child with MDS. I know that frustration builds when there is a delay

>>in communication, and that often causes the child to lash out by hitting,

>>biting, or thowing a fit. (perhaps you can include your input on that)

>> Also, as I wrote in our last newsletter, Wandering is a big issue

>> with

>>children with MDS.

>> Are there other specific behaviors that you are dealing with or have

>>dealt with? And, what age is or has your child exhibited this behavior?

>>

>> Thanks

>> Kristy

>>

>>

>>

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Hi, I just had to mention that who is three has been doing the arm

and hand flapping since he was one. And he only does this when he gets

excited too!

Concerning Behaviors

>>

>>

>> Hi Everyone,

>> I was wondering if you could characterize some specific behaviors in

>>your child with MDS. I know that frustration builds when there is a delay

>>in communication, and that often causes the child to lash out by hitting,

>>biting, or thowing a fit. (perhaps you can include your input on that)

>> Also, as I wrote in our last newsletter, Wandering is a big issue

>> with

>>children with MDS.

>> Are there other specific behaviors that you are dealing with or have

>>dealt with? And, what age is or has your child exhibited this behavior?

>>

>> Thanks

>> Kristy

>>

>>

>>

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Mahrya pretends all the time and has a hard time transitioning to " real life "

when she is in the middle of role playing something. She seems to need to

finish with the pretend or she gets really put out. She doesn't do the hand or

arm flapping that has been mentioned. She doesn't seem to have rpoblems with

hitting or biting, but she has pretty good communtication skills, so that

probably helps. One of the main things we are having issues with right now

(Mahrya is 9) is wetting her pants. She had been very reliable, but all of the

sudden she is having a few accidents a week. She has yet to stay dry at

night....ever. Anyone else have these issues?

Luanne

Kristy Colvin wrote:

Hi Everyone,

I was wondering if you could characterize some specific behaviors in your

child with MDS. I know that frustration builds when there is a delay in

communication, and that often causes the child to lash out by hitting, biting,

or thowing a fit. (perhaps you can include your input on that)

Also, as I wrote in our last newsletter, Wandering is a big issue with

children with MDS.

Are there other specific behaviors that you are dealing with or have dealt

with? And, what age is or has your child exhibited this behavior?

Thanks

Kristy

Link to comment
Share on other sites

Guest guest

Luanne,

It's funny because the more I read everyone's descriptions the more it sounds

like my son. Aidan's only 3 1/2 and took us a whole year for the potty training

to finally catch on, then another 6 months or so for it to be consistent. Then

he was doing great, sleeping through the night dry and everything. About a

month ago he started wetting his pants again during the day and then when we put

him to bed at night he would wake up wet several times. I told my husband I

wonder if there's something that would cause a person to suddenly lose the

ability to hold it in - because he used to hold it for a very long time until we

had to remind him to go.

Anyway, he also used to bite and hit - A LOT - when he'd get frustrated with

people, but most of it was because of his lack of communication. Now that he's

in preschool and they focus a lot on repetitive reminders (like using signs for

" my turn " and holding out his hand) he no longer bites. He does still hit his

sister a LOT when he gets annoyed with her and has to be reminded CONSTANTLY to

use his words. He definitely shows frustration with his body actions and

screaming a lot more than pouting or tattling I see from his cousins.

Kristy, I love these kind of comparisons because it gives a lot more insight

on what kinds of behaviors are to be expected and for me, reminds me to be more

patient with him as I see that other people are going through the same things.

Plus, with all the unknowns about MDS, it's nice to have so many norms that we

can still find through communicating with one another!

Aidan 3 1/2 mds, a 2, 1 month

Luanne Eckert wrote:

Mahrya pretends all the time and has a hard time transitioning to " real life "

when she is in the middle of role playing something. She seems to need to

finish with the pretend or she gets really put out. She doesn't do the hand or

arm flapping that has been mentioned. She doesn't seem to have rpoblems with

hitting or biting, but she has pretty good communtication skills, so that

probably helps. One of the main things we are having issues with right now

(Mahrya is 9) is wetting her pants. She had been very reliable, but all of the

sudden she is having a few accidents a week. She has yet to stay dry at

night....ever. Anyone else have these issues?

Luanne

Kristy Colvin wrote:

Hi Everyone,

I was wondering if you could characterize some specific behaviors in your

child with MDS. I know that frustration builds when there is a delay in

communication, and that often causes the child to lash out by hitting, biting,

or thowing a fit. (perhaps you can include your input on that)

Also, as I wrote in our last newsletter, Wandering is a big issue with

children with MDS.

Are there other specific behaviors that you are dealing with or have dealt

with? And, what age is or has your child exhibited this behavior?

Thanks

Kristy

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Share on other sites

Guest guest

,

I agree that this is a GREAT discussion! We always wonder what is " normal " and

what isn't! I know that I wondered it all the time that Tim was growing up. One

thing that I did discover in raising him though is no matter the reason for the

behavior, if it was unacceptable, it was unacceptable! It may take longer for

children with MDS to learn what is and is not acceptable behavior, but in order

for them to get along with the general population they still have to learn it!

As for the potty accidents it looks to me as he is regressing because of new

baby . I would make a big deal about what a big boy he is, but also make

sure he gets extra cuddling. I know your hands must be really full with 3 babies

in the house!

Kristy

and wrote:

Luanne,

It's funny because the more I read everyone's descriptions the more it sounds

like my son. Aidan's only 3 1/2 and took us a whole year for the potty training

to finally catch on, then another 6 months or so for it to be consistent. Then

he was doing great, sleeping through the night dry and everything. About a

month ago he started wetting his pants again during the day and then when we put

him to bed at night he would wake up wet several times. I told my husband I

wonder if there's something that would cause a person to suddenly lose the

ability to hold it in - because he used to hold it for a very long time until we

had to remind him to go.

Anyway, he also used to bite and hit - A LOT - when he'd get frustrated with

people, but most of it was because of his lack of communication. Now that he's

in preschool and they focus a lot on repetitive reminders (like using signs for

" my turn " and holding out his hand) he no longer bites. He does still hit his

sister a LOT when he gets annoyed with her and has to be reminded CONSTANTLY to

use his words. He definitely shows frustration with his body actions and

screaming a lot more than pouting or tattling I see from his cousins.

Kristy, I love these kind of comparisons because it gives a lot more insight

on what kinds of behaviors are to be expected and for me, reminds me to be more

patient with him as I see that other people are going through the same things.

Plus, with all the unknowns about MDS, it's nice to have so many norms that we

can still find through communicating with one another!

Aidan 3 1/2 mds, a 2, 1 month

Luanne Eckert wrote:

Mahrya pretends all the time and has a hard time transitioning to " real life "

when she is in the middle of role playing something. She seems to need to

finish with the pretend or she gets really put out. She doesn't do the hand or

arm flapping that has been mentioned. She doesn't seem to have rpoblems with

hitting or biting, but she has pretty good communtication skills, so that

probably helps. One of the main things we are having issues with right now

(Mahrya is 9) is wetting her pants. She had been very reliable, but all of the

sudden she is having a few accidents a week. She has yet to stay dry at

night....ever. Anyone else have these issues?

Luanne

Kristy Colvin wrote:

Hi Everyone,

I was wondering if you could characterize some specific behaviors in your

child with MDS. I know that frustration builds when there is a delay in

communication, and that often causes the child to lash out by hitting, biting,

or thowing a fit. (perhaps you can include your input on that)

Also, as I wrote in our last newsletter, Wandering is a big issue with

children with MDS.

Are there other specific behaviors that you are dealing with or have dealt

with? And, what age is or has your child exhibited this behavior?

Thanks

Kristy

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Luanne,

It seems that I used to have the same problem with Tim when he was younger. I

would always warn him when he had to wrap up his play time and I would ask him

to invite his " friends " along if we needed to go somewhere.

This reminds me of a really funny story that happened to us last year with

Garrett (non-MDS). During a baseball game he was in the outfield talking to

himself and not really paying attention. I finally walked out there and told him

that he was going to get hit by a ball if he didn't pay attention. He said, " It

isn't my fault! Bob keeps distracting me! " LOL " Bob " is his imaginary friend! He

realizes that Bob isn't real, but he likes to pretend that he is.

Kristy

Luanne Eckert wrote:

Mahrya pretends all the time and has a hard time transitioning to " real life "

when she is in the middle of role playing something. She seems to need to

finish with the pretend or she gets really put out. She doesn't do the hand or

arm flapping that has been mentioned. She doesn't seem to have rpoblems with

hitting or biting, but she has pretty good communtication skills, so that

probably helps. One of the main things we are having issues with right now

(Mahrya is 9) is wetting her pants. She had been very reliable, but all of the

sudden she is having a few accidents a week. She has yet to stay dry at

night....ever. Anyone else have these issues?

Luanne

Kristy Colvin wrote:

Hi Everyone,

I was wondering if you could characterize some specific behaviors in your

child with MDS. I know that frustration builds when there is a delay in

communication, and that often causes the child to lash out by hitting, biting,

or thowing a fit. (perhaps you can include your input on that)

Also, as I wrote in our last newsletter, Wandering is a big issue with

children with MDS.

Are there other specific behaviors that you are dealing with or have dealt

with? And, what age is or has your child exhibited this behavior?

Thanks

Kristy

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Share on other sites

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does not flap hands, but she has always loved any toy that flaps.

She has one major imaginary friend who is usually responsible for getting her

in trouble. She engages in alot of fantasy play.

is also a runner, which is a big concern at school this year. I think the

running has alot to do with anxiety. She has many aggressive behaviors -

hitting, swearing, spitting, which usually happen in a rage or at least when

she's edgy. For some children having an additional diagnosis makes addressing

these behaviors rather difficult.

has excellent communication skills. But, although she talks like a 12

year old she doesn't process or reason like a 12 year old - and that is a huge

problem when the people who are dealing with her don't understand that.

Up until the last year was still having regular accidents and was in

pull-ups at night. Compared to everything else we deal with I was content for

her to be in pull-ups as long as they made ones big enough for her. Patience

paid off.

Sue

(Norah 17, 12 MDS & ADHD)

Re: Concerning Behaviors

Luanne,

It seems that I used to have the same problem with Tim when he was younger. I

would always warn him when he had to wrap up his play time and I would ask him

to invite his " friends " along if we needed to go somewhere.

This reminds me of a really funny story that happened to us last year with

Garrett (non-MDS). During a baseball game he was in the outfield talking to

himself and not really paying attention. I finally walked out there and told him

that he was going to get hit by a ball if he didn't pay attention. He said, " It

isn't my fault! Bob keeps distracting me! " LOL " Bob " is his imaginary friend! He

realizes that Bob isn't real, but he likes to pretend that he is.

Kristy

Luanne Eckert wrote:

Mahrya pretends all the time and has a hard time transitioning to " real life "

when she is in the middle of role playing something. She seems to need to

finish with the pretend or she gets really put out. She doesn't do the hand or

arm flapping that has been mentioned. She doesn't seem to have rpoblems with

hitting or biting, but she has pretty good communtication skills, so that

probably helps. One of the main things we are having issues with right now

(Mahrya is 9) is wetting her pants. She had been very reliable, but all of the

sudden she is having a few accidents a week. She has yet to stay dry at

night....ever. Anyone else have these issues?

Luanne

Kristy Colvin wrote:

Hi Everyone,

I was wondering if you could characterize some specific behaviors in your

child with MDS. I know that frustration builds when there is a delay in

communication, and that often causes the child to lash out by hitting, biting,

or thowing a fit. (perhaps you can include your input on that)

Also, as I wrote in our last newsletter, Wandering is a big issue with

children with MDS.

Are there other specific behaviors that you are dealing with or have dealt

with? And, what age is or has your child exhibited this behavior?

Thanks

Kristy

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Sue,

With the pull up thing, did you just wait for her to grow out of it, or did

you get her up at night to go? So far we have been taking the attitude of

letting her grow out of it, and making sure she goes before bed.

Luanne

Caregar@... wrote:

does not flap hands, but she has always loved any toy that flaps.

She has one major imaginary friend who is usually responsible for getting her

in trouble. She engages in alot of fantasy play.

is also a runner, which is a big concern at school this year. I think the

running has alot to do with anxiety. She has many aggressive behaviors -

hitting, swearing, spitting, which usually happen in a rage or at least when

she's edgy. For some children having an additional diagnosis makes addressing

these behaviors rather difficult.

has excellent communication skills. But, although she talks like a 12

year old she doesn't process or reason like a 12 year old - and that is a huge

problem when the people who are dealing with her don't understand that.

Up until the last year was still having regular accidents and was in

pull-ups at night. Compared to everything else we deal with I was content for

her to be in pull-ups as long as they made ones big enough for her. Patience

paid off.

Sue

(Norah 17, 12 MDS & ADHD)

Re: Concerning Behaviors

Luanne,

It seems that I used to have the same problem with Tim when he was younger. I

would always warn him when he had to wrap up his play time and I would ask him

to invite his " friends " along if we needed to go somewhere.

This reminds me of a really funny story that happened to us last year with

Garrett (non-MDS). During a baseball game he was in the outfield talking to

himself and not really paying attention. I finally walked out there and told him

that he was going to get hit by a ball if he didn't pay attention. He said, " It

isn't my fault! Bob keeps distracting me! " LOL " Bob " is his imaginary friend! He

realizes that Bob isn't real, but he likes to pretend that he is.

Kristy

Luanne Eckert wrote:

Mahrya pretends all the time and has a hard time transitioning to " real life "

when she is in the middle of role playing something. She seems to need to

finish with the pretend or she gets really put out. She doesn't do the hand or

arm flapping that has been mentioned. She doesn't seem to have rpoblems with

hitting or biting, but she has pretty good communtication skills, so that

probably helps. One of the main things we are having issues with right now

(Mahrya is 9) is wetting her pants. She had been very reliable, but all of the

sudden she is having a few accidents a week. She has yet to stay dry at

night....ever. Anyone else have these issues?

Luanne

Kristy Colvin wrote:

Hi Everyone,

I was wondering if you could characterize some specific behaviors in your

child with MDS. I know that frustration builds when there is a delay in

communication, and that often causes the child to lash out by hitting, biting,

or thowing a fit. (perhaps you can include your input on that)

Also, as I wrote in our last newsletter, Wandering is a big issue with

children with MDS.

Are there other specific behaviors that you are dealing with or have dealt

with? And, what age is or has your child exhibited this behavior?

Thanks

Kristy

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Luanne,

We did just let her grow out of it. I figured that when her body was ready

she'd stay dry and she has - it just took longer than most kids.

good luck!

Sue

Re: Concerning Behaviors

Luanne,

It seems that I used to have the same problem with Tim when he was younger. I

would always warn him when he had to wrap up his play time and I would ask him

to invite his " friends " along if we needed to go somewhere.

This reminds me of a really funny story that happened to us last year with

Garrett (non-MDS). During a baseball game he was in the outfield talking to

himself and not really paying attention. I finally walked out there and told him

that he was going to get hit by a ball if he didn't pay attention. He said, " It

isn't my fault! Bob keeps distracting me! " LOL " Bob " is his imaginary friend! He

realizes that Bob isn't real, but he likes to pretend that he is.

Kristy

Luanne Eckert wrote:

Mahrya pretends all the time and has a hard time transitioning to " real life "

when she is in the middle of role playing something. She seems to need to

finish with the pretend or she gets really put out. She doesn't do the hand or

arm flapping that has been mentioned. She doesn't seem to have rpoblems with

hitting or biting, but she has pretty good communtication skills, so that

probably helps. One of the main things we are having issues with right now

(Mahrya is 9) is wetting her pants. She had been very reliable, but all of the

sudden she is having a few accidents a week. She has yet to stay dry at

night....ever. Anyone else have these issues?

Luanne

Kristy Colvin wrote:

Hi Everyone,

I was wondering if you could characterize some specific behaviors in your

child with MDS. I know that frustration builds when there is a delay in

communication, and that often causes the child to lash out by hitting, biting,

or thowing a fit. (perhaps you can include your input on that)

Also, as I wrote in our last newsletter, Wandering is a big issue with

children with MDS.

Are there other specific behaviors that you are dealing with or have dealt

with? And, what age is or has your child exhibited this behavior?

Thanks

Kristy

Link to comment
Share on other sites

Guest guest

Sue,

I totally understand the processing issue! That was our biggest problem when

Tim was in school. Because he spoke very intelligently, the school expected him

to understand everything. He, too, has ADHD, so that was a BIG issue with us.

In hind site, I think I should have written out a letter to be included in his

IEP. In the letter, I could have put things about his processing issues and his

attention issues. The school knew about these problems, but I think they were

ignored.

Kristy

Caregar@... wrote:

does not flap hands, but she has always loved any toy that flaps.

She has one major imaginary friend who is usually responsible for getting her

in trouble. She engages in alot of fantasy play.

is also a runner, which is a big concern at school this year. I think the

running has alot to do with anxiety. She has many aggressive behaviors -

hitting, swearing, spitting, which usually happen in a rage or at least when

she's edgy. For some children having an additional diagnosis makes addressing

these behaviors rather difficult.

has excellent communication skills. But, although she talks like a 12

year old she doesn't process or reason like a 12 year old - and that is a huge

problem when the people who are dealing with her don't understand that.

Up until the last year was still having regular accidents and was in

pull-ups at night. Compared to everything else we deal with I was content for

her to be in pull-ups as long as they made ones big enough for her. Patience

paid off.

Sue

(Norah 17, 12 MDS & ADHD)

Re: Concerning Behaviors

Luanne,

It seems that I used to have the same problem with Tim when he was younger. I

would always warn him when he had to wrap up his play time and I would ask him

to invite his " friends " along if we needed to go somewhere.

This reminds me of a really funny story that happened to us last year with

Garrett (non-MDS). During a baseball game he was in the outfield talking to

himself and not really paying attention. I finally walked out there and told him

that he was going to get hit by a ball if he didn't pay attention. He said, " It

isn't my fault! Bob keeps distracting me! " LOL " Bob " is his imaginary friend! He

realizes that Bob isn't real, but he likes to pretend that he is.

Kristy

Luanne Eckert wrote:

Mahrya pretends all the time and has a hard time transitioning to " real life "

when she is in the middle of role playing something. She seems to need to

finish with the pretend or she gets really put out. She doesn't do the hand or

arm flapping that has been mentioned. She doesn't seem to have rpoblems with

hitting or biting, but she has pretty good communtication skills, so that

probably helps. One of the main things we are having issues with right now

(Mahrya is 9) is wetting her pants. She had been very reliable, but all of the

sudden she is having a few accidents a week. She has yet to stay dry at

night....ever. Anyone else have these issues?

Luanne

Kristy Colvin wrote:

Hi Everyone,

I was wondering if you could characterize some specific behaviors in your

child with MDS. I know that frustration builds when there is a delay in

communication, and that often causes the child to lash out by hitting, biting,

or thowing a fit. (perhaps you can include your input on that)

Also, as I wrote in our last newsletter, Wandering is a big issue with

children with MDS.

Are there other specific behaviors that you are dealing with or have dealt

with? And, what age is or has your child exhibited this behavior?

Thanks

Kristy

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Share on other sites

Guest guest

In a message dated 3/8/2006 7:13:11 PM Eastern Standard Time,

luannee@... writes:

One of the main things we are having issues with right now (Mahrya is 9) is

wetting her pants. She had been very reliable, but all of the sudden she is

having a few accidents a week. She has yet to stay dry at night....ever.

Anyone else have these issues?

LUANNE:

Just wanted you to know that Karlee too has been reliable. She has been

potty trained since two and the only time she has an accident is when she is

really tickled!!!! So, when she laughs we hold our breath! LOL! But, I too do

that, so it's probably a girl thing. But, back to why I emailed at the

beginning of the school year Karlee had came home two days with damp panties and

had two accidents after coming home, so my sister (who is an R.N.) said take her

to the dr. for a urine test to see if she had a urinary tract infection. SHE

DID! I was so glad she told me! From now on, if I feel she is having more

that a " laughing pee pee " we will go the ped.

TTYS!

Beets

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-

is very immature for her age - she is 7 but prefers to be with 5 year

old boys (mainly because they don't talk much and don't expect her too

either). But she is very social and tries to hang out with the older girls

but they don't include her because she doesn't act like them and talk or

whisper. She will follow them around like a puppy but they don't include

her and it hurts me to see that.

Darlene - mom to (9) and (7)

>

> Hi All!

>

> .I was interested to see the questions here regarding our children's

> behaviors...Now we all know that for our children Down Syndrome is somewhat

> of a Spectrum Disorder...some our children look typically DS and some do

> not...some fall right in the middle...Some have average or above average IQs

> and some do not etc....I would like to know how everyone elses children are

> socially...do they have a lot of friends? Do you think that they act

> immature?...Do they tend to talk out of context?...Im asking this because

> Ariel, who some of you may remember was diagnosed with as High Functioning

> Autistic a few years back, is definitely socially immature...I have seen

> many posts over the years concerning children that had the same issues. As

> our children get older, Ariel is 12, how are their friendships, how do they

> relate to their peers? For Ariel friendships have gotten harder as she has

> gotten older...how about for anyone else?

>

> Sincerely,

> :) Mom to Ariel 12 MDS, and the twins 7

>

>

> Become a member of IMDSA today at http://www.imdsa.com

> *************************************************

> Contact IMDSA Today at:

> IMDSA~PO Box 1052~lin,TX~77856~USA~1-

> *************************************************

>

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Hi ,

This has always been the biggest issue that we have faced with Tim. Although

he has never been officially diagnosed with Asperger syndrome, I know without a

doubt that is what he has. He meets every single criteria except 3 and those 3

things he used to do!

Tim is socially immature and as he grew older he had a terrible time making

friends. I can say that he did finally make good friends with 3 other teens his

age several years back and they were inseperable until graduation. The other

boys have moved off to persue carreers, so that is kinda sad now that he doesn't

have those boys now.

Tim does talk out of context sometimes and it drives me crazy! LOL I think he

has trouble processing information spoken to him. Sometimes, when I am talking

with him all of the sudden he will ask a question about what I am saying and it

has NOTHING to do with what I am saying! And, he does have trouble talking to

peers that he is not close to. He starts acting silly or he will just say

nothing at all.

Now, the good news is, he is working really hard at improving these problems

in his life and I think he is doing a wonderful job. I think that when he was in

school, those around him made him very nervous and that made him act the way he

did. Since he has been out of school and just home with me, he has acted totally

different. While in school, he would peel his skin and make sores, he would make

noises with his mouth, and he couldn't interact with his peers appropriately.

Now, he has NO sores at all! He rarely makes the noises with his mouth, in fact,

I haven't heard those noises in a long time! (lol watch him do it today!) and

when he goes to his karate class he seems to be acting much better. He talks

with the kids there and rarely acts out.

So, my thought is, yes, too many people make him nervous. Plus, the kids at

school picked on him and that made matters worse. But, in the past few years, I

have seen a tremendous difference in his behavior and he is maturing a lot.

Kristy

ajaaj@... wrote:

Hi All!

..I was interested to see the questions here regarding our children's

behaviors...Now we all know that for our children Down Syndrome is somewhat of a

Spectrum Disorder...some our children look typically DS and some do not...some

fall right in the middle...Some have average or above average IQs and some do

not etc....I would like to know how everyone elses children are socially...do

they have a lot of friends? Do you think that they act immature?...Do they tend

to talk out of context?...Im asking this because Ariel, who some of you may

remember was diagnosed with as High Functioning Autistic a few years back, is

definitely socially immature...I have seen many posts over the years concerning

children that had the same issues. As our children get older, Ariel is 12, how

are their friendships, how do they relate to their peers? For Ariel friendships

have gotten harder as she has gotten older...how about for anyone else?

Sincerely,

:) Mom to Ariel 12 MDS, and the twins 7

Become a member of IMDSA today at http://www.imdsa.com

*************************************************

Contact IMDSA Today at:

IMDSA~PO Box 1052~lin,TX~77856~USA~1-

*************************************************

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