Re: Follow up to my question

[Guest guest]

Carmen...

I wasn't sure I was coming across right.... I didn't make myself clear... I

was responding to MULTIPLE posts on other topics while responding to

yours...and was mostly making blanket statements, not personal ones.

I should have separated them...I'm sorry!

Angel

In a message dated 6/16/2008 10:47:35 A.M. Mountain Daylight Time,

cnpsyd@... writes:

First let me say that I apologize if I offended anyone by asking my

previous questions in regards to certain behaviors being related to

MDS. I think that perhaps I could have asked my question in another

way or explained myself and my thoughts a bit more. I did not intend

for people to think that I am constantly asking myself about things

or questioning everything that Sydney does and attempting to see if

it relates to her having MDS because that is not the case. I think I

am very inquisitive by nature and as a first time mom having a

daughter with MDS poses some challenges. Being a mom comes with it's

own challenges but it is also a different sort of challenge having a

child with developmental delays. I am totally up for the challenge

and I continue to do a lot to keep her stimulated and to teach her

new things each day.

Before she was born, I was told that she would not be capable of

doing a lot of " normal " things like other children. That was hurtful

but I knew that I would love her no matter what. Now that she is here

I feel like I can't believe people can talk so negatively about

people with DS. I feel that my daughter is doing very well despite

her delays. She is very smart, active and determined.

I am a psychology graduate so I guess I am constantly searching for

answers as to what drives the actions of individuals. I know that

there are certain things that are characterstic of other children who

are on the Autism spectrum for example or children with Pervasive

Developmental disorders in general or even children with Reactive

Attachment Disorder and the list goes on and on. As a mother I just

want the best for my daughter and I have provided her with many

resources such as PT and ST. I plan to continue to provide her with

resources to enhance her growth throughout life.

I was just wondering if certain behaviors like being easily

frustrated could be connected to her speech delays because I know she

understands a lot but she is not able to communicate verbally yet and

I sometimes wonder if that could contribute to her frustration at

times. With that said I was just inquring to see if I should be doing

anything more to help her in order to attempt to prevent her from

becoming so frustrated. It is hard to see her go through those times

when she becomes frustrated. And since she is my first child I really

have nothing else to compare her to.

Again, my post had no negative intent. I felt the need to explain

more and apologize. As I re-read it I understand that people may take

my comments the wrong way. I am just trying to help my Sydney as best

I can and I wanted to hear stories that may be similar out there that

is all.

Thanks,

Carmen

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[Guest guest]

Carmen: No need to apologize here. No offensive taken and i also

apoligize if it seemed i was a little to the point. I have gone

through every emotion 10x's over in this journey. I like you am

curious and reaching for answers for everything. The more you know

the further you go in every aspect. It's definetly not a bad thing

to inquire to moms especially the ones that are " there " with you in

this situation, but i also feel like there probably is a lot of extra

classifing going on. We're all scared, we're all looking, analyzing,

and hoping for anything good to hold on to. I do believe we can all

help each other in our own way, keeping in mind that our children are

still different although " alike " .

Camisha

>

> First let me say that I apologize if I offended anyone by asking my

> previous questions in regards to certain behaviors being related to

> MDS. I think that perhaps I could have asked my question in another

> way or explained myself and my thoughts a bit more. I did not

intend

> for people to think that I am constantly asking myself about things

> or questioning everything that Sydney does and attempting to see if

> it relates to her having MDS because that is not the case. I think

I

> am very inquisitive by nature and as a first time mom having a

> daughter with MDS poses some challenges. Being a mom comes with

it's

> own challenges but it is also a different sort of challenge having

a

> child with developmental delays. I am totally up for the challenge

> and I continue to do a lot to keep her stimulated and to teach her

> new things each day.

>

> Before she was born, I was told that she would not be capable of

> doing a lot of " normal " things like other children. That was

hurtful

> but I knew that I would love her no matter what. Now that she is

here

> I feel like I can't believe people can talk so negatively about

> people with DS. I feel that my daughter is doing very well despite

> her delays. She is very smart, active and determined.

>

> I am a psychology graduate so I guess I am constantly searching for

> answers as to what drives the actions of individuals. I know that

> there are certain things that are characterstic of other children

who

> are on the Autism spectrum for example or children with Pervasive

> Developmental disorders in general or even children with Reactive

> Attachment Disorder and the list goes on and on. As a mother I just

> want the best for my daughter and I have provided her with many

> resources such as PT and ST. I plan to continue to provide her with

> resources to enhance her growth throughout life.

>

> I was just wondering if certain behaviors like being easily

> frustrated could be connected to her speech delays because I know

she

> understands a lot but she is not able to communicate verbally yet

and

> I sometimes wonder if that could contribute to her frustration at

> times. With that said I was just inquring to see if I should be

doing

> anything more to help her in order to attempt to prevent her from

> becoming so frustrated. It is hard to see her go through those

times

> when she becomes frustrated. And since she is my first child I

really

> have nothing else to compare her to.

>

> Again, my post had no negative intent. I felt the need to explain

> more and apologize. As I re-read it I understand that people may

take

> my comments the wrong way. I am just trying to help my Sydney as

best

> I can and I wanted to hear stories that may be similar out there

that

> is all.

>

> Thanks,

> Carmen

>

[Guest guest]

Hi Carmen

That is what we are all here for! To ask questions and understand what is going

on! If you have read my blog for the past week, you can see that I was in the

same shoes as you are now-- wondering what was going on with Tim and was it an

MDS thing or a Tim thing or something else!

& nbsp;

In many ways, I have learned that most things that Tim does is just a " Tim

thing " lol Each child is an individual and each do their own thing!

& nbsp;

I think with your baby being frustrated, at this point, is typical for her age

regardless of MDS or not. Most kids that age get frustrated easily when things

don't go their way, and so they break into tears or throw a fit. When my boys

were young, they wanted more than anything to build with blocks. But, when the

blocks wouldn't stack the way they wanted them, they would throw them and start

crying and usually have a major melt down! So.... I would help them have words

for their feelings. I would say things like " the blocks made you mad " or & nbsp; I

would make them laugh and say " mean blocks " But, mainly I would just redirect

them and get them interested in something else or I would help them stack the

blocks again. (sometimes that didn't work...they loved having melt downs!)

It is hard, because you heard all the negative, and mostly incorrect,

information in the beginning. But, as she is growing you are seeing that the

information was wrong. My best advise is to expect the very best from her. Don't

ever make excuses as to why she can not do something. Don't ever let her say " I

can't " instead have her say " I'll Try "

and....keep asking questions!!!!

& nbsp;

Kristy Colvin

IMDSA President

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

www.imdsa.com

http://www.mosaicmoments.today.com

& nbsp;

From: Carmen Naylor & lt;cnpsyd@... & gt;

Subject: Follow up to my question

To: MosaicDS

Date: Monday, June 16, 2008, 11:47 AM

First let me say that I apologize if I offended anyone by asking my

previous questions in regards to certain behaviors being related to

MDS. I think that perhaps I could have asked my question in another

way or explained myself and my thoughts a bit more. I did not intend

for people to think that I am constantly asking myself about things

or questioning everything that Sydney does and attempting to see if

it relates to her having MDS because that is not the case. I think I

am very inquisitive by nature and as a first time mom having a

daughter with MDS poses some challenges. Being a mom comes with it's

own challenges but it is also a different sort of challenge having a

child with developmental delays. I am totally up for the challenge

and I continue to do a lot to keep her stimulated and to teach her

new things each day.

Before she was born, I was told that she would not be capable of

doing a lot of " normal " things like other children. That was hurtful

but I knew that I would love her no matter what. Now that she is here

I feel like I can't believe people can talk so negatively about

people with DS. I feel that my daughter is doing very well despite

her delays. She is very smart, active and determined.

I am a psychology graduate so I guess I am constantly searching for

answers as to what drives the actions of individuals. I know that

there are certain things that are characterstic of other children who

are on the Autism spectrum for example or children with Pervasive

Developmental disorders in general or even children with Reactive

Attachment Disorder and the list goes on and on. As a mother I just

want the best for my daughter and I have provided her with many

resources such as PT and ST. I plan to continue to provide her with

resources to enhance her growth throughout life.

I was just wondering if certain behaviors like being easily

frustrated could be connected to her speech delays because I know she

understands a lot but she is not able to communicate verbally yet and

I sometimes wonder if that could contribute to her frustration at

times. With that said I was just inquring to see if I should be doing

anything more to help her in order to attempt to prevent her from

becoming so frustrated. It is hard to see her go through those times

when she becomes frustrated. And since she is my first child I really

have nothing else to compare her to.

Again, my post had no negative intent. I felt the need to explain

more and apologize. As I re-read it I understand that people may take

my comments the wrong way. I am just trying to help my Sydney as best

I can and I wanted to hear stories that may be similar out there that

is all.

Thanks,

Carmen

[Guest guest]

Hi Carmen,

& nbsp;

I have read your messages with interest. Very eloquently written and straight

from the heart.

& nbsp;

My & nbsp; boy (Benji) is 6 now and as I wrote only VERY recently: sometimes I can

go months without & nbsp;a single 'soul search'. & nbsp;Other times, I have a

million questions all at once. They pour out at such speed that I could drown in

them!

& nbsp;

Benji used to become very frustrated by the smallest, most insignificant things.

At least I thought they were insignificant! And tantrums?!!!!!! For a small

bloke he couldn't half pack a punch! I used to wonder where the anger came from

and wonder even more whether it would ever go. It did. With increased ability

came a marked decrease in frustrations.

& nbsp;

We DID encourage Ben to use Makaton. This definitely helped AROUND THE HOME, but

so few people had use of it outside of the family that it wasn't a massive

help. & nbsp;It did however & nbsp;give him greater

confidence..enpowerment! & nbsp;And I remember we used to have an 'OWLing zone' (a

makaton term, meaning Observe, Wait, Listen). It was the kitchen. Everyone

understood that when Ben came came into the kitchen to speak to someone, we all

had to stop and listen and give him that extra bit of time to get his point

across. Simple, but effective!

& nbsp;

Ben has an older daughter (Meg). She's just growing INTO her temper!!! God help

me!

& nbsp;

Sounds to me like Sydney found herself the right mummy! Hmm, clever.

& nbsp;

Kaz

x

& nbsp;

From: Carmen Naylor & lt;cnpsyd@... & gt;

Subject: Follow up to my question

To: MosaicDS

Date: Monday, 16 June, 2008, 5:47 PM

First let me say that I apologize if I offended anyone by asking my

previous questions in regards to certain behaviors being related to

MDS. I think that perhaps I could have asked my question in another

way or explained myself and my thoughts a bit more. I did not intend

for people to think that I am constantly asking myself about things

or questioning everything that Sydney does and attempting to see if

it relates to her having MDS because that is not the case. I think I

am very inquisitive by nature and as a first time mom having a

daughter with MDS poses some challenges. Being a mom comes with it's

own challenges but it is also a different sort of challenge having a

child with developmental delays. I am totally up for the challenge

and I continue to do a lot to keep her stimulated and to teach her

new things each day.

Before she was born, I was told that she would not be capable of

doing a lot of " normal " things like other children. That was hurtful

but I knew that I would love her no matter what. Now that she is here

I feel like I can't believe people can talk so negatively about

people with DS. I feel that my daughter is doing very well despite

her delays. She is very smart, active and determined.

I am a psychology graduate so I guess I am constantly searching for

answers as to what drives the actions of individuals. I know that

there are certain things that are characterstic of other children who

are on the Autism spectrum for example or children with Pervasive

Developmental disorders in general or even children with Reactive

Attachment Disorder and the list goes on and on. As a mother I just

want the best for my daughter and I have provided her with many

resources such as PT and ST. I plan to continue to provide her with

resources to enhance her growth throughout life.

I was just wondering if certain behaviors like being easily

frustrated could be connected to her speech delays because I know she

understands a lot but she is not able to communicate verbally yet and

I sometimes wonder if that could contribute to her frustration at

times. With that said I was just inquring to see if I should be doing

anything more to help her in order to attempt to prevent her from

becoming so frustrated. It is hard to see her go through those times

when she becomes frustrated. And since she is my first child I really

have nothing else to compare her to.

Again, my post had no negative intent. I felt the need to explain

more and apologize. As I re-read it I understand that people may take

my comments the wrong way. I am just trying to help my Sydney as best

I can and I wanted to hear stories that may be similar out there that

is all.

Thanks,

Carmen

__________________________________________________________

Sent from Yahoo! Mail.

A Smarter Email http://uk.docs.yahoo.com/nowyoucan.html

[Guest guest]

Carmen,You arent any different than the rest of us. Please dont say

sorry. We can only ask questions to get the knowledge we need to help

our kids. It has been so hard trying to figure out Haileys disorders.

I have asked the same question you did. By asking I have learned that

some things she was doing were not normal which led me to finding out

about her other disorders. If I had cancer and was talking to someone

that had been there I would want to find out if this went on with

them while they were going through it. Its all about educating

yourself so you can better help your child. I was not offended at

all.I am here if you have any other questions or if you learn

anything new with her sensory issues. Im still trying to learn all I

can on that one.lol..One of the post to me had alot of sites to go to

on this disorder. ttyl Becky (Hailey 5)

>

> First let me say that I apologize if I offended anyone by asking my

> previous questions in regards to certain behaviors being related to

> MDS. I think that perhaps I could have asked my question in another

> way or explained myself and my thoughts a bit more. I did not

intend

> for people to think that I am constantly asking myself about things

> or questioning everything that Sydney does and attempting to see if

> it relates to her having MDS because that is not the case. I think

I

> am very inquisitive by nature and as a first time mom having a

> daughter with MDS poses some challenges. Being a mom comes with

it's

> own challenges but it is also a different sort of challenge having

a

> child with developmental delays. I am totally up for the challenge

> and I continue to do a lot to keep her stimulated and to teach her

> new things each day.

>

> Before she was born, I was told that she would not be capable of

> doing a lot of " normal " things like other children. That was

hurtful

> but I knew that I would love her no matter what. Now that she is

here

> I feel like I can't believe people can talk so negatively about

> people with DS. I feel that my daughter is doing very well despite

> her delays. She is very smart, active and determined.

>

> I am a psychology graduate so I guess I am constantly searching for

> answers as to what drives the actions of individuals. I know that

> there are certain things that are characterstic of other children

who

> are on the Autism spectrum for example or children with Pervasive

> Developmental disorders in general or even children with Reactive

> Attachment Disorder and the list goes on and on. As a mother I just

> want the best for my daughter and I have provided her with many

> resources such as PT and ST. I plan to continue to provide her with

> resources to enhance her growth throughout life.

>

> I was just wondering if certain behaviors like being easily

> frustrated could be connected to her speech delays because I know

she

> understands a lot but she is not able to communicate verbally yet

and

> I sometimes wonder if that could contribute to her frustration at

> times. With that said I was just inquring to see if I should be

doing

> anything more to help her in order to attempt to prevent her from

> becoming so frustrated. It is hard to see her go through those

times

> when she becomes frustrated. And since she is my first child I

really

> have nothing else to compare her to.

>

> Again, my post had no negative intent. I felt the need to explain

> more and apologize. As I re-read it I understand that people may

take

> my comments the wrong way. I am just trying to help my Sydney as

best

> I can and I wanted to hear stories that may be similar out there

that

> is all.

>

> Thanks,

> Carmen

>

[Guest guest]

Yes Carmen, dont apologize, trust me we ALL have these thoughts about one thing

or another of our childs behaviors. We are new at this! Keep up the good work as

a mother!

From: Becky & lt;ladynotlistenin@... & gt;

Subject: Re: Follow up to my question

To: MosaicDS

Date: Monday, June 16, 2008, 3:15 PM

Carmen,You arent any different than the rest of us. Please dont say

sorry. We can only ask questions to get the knowledge we need to help

our kids. It has been so hard trying to figure out Haileys disorders.

I have asked the same question you did. By asking I have learned that

some things she was doing were not normal which led me to finding out

about her other disorders. If I had cancer and was talking to someone

that had been there I would want to find out if this went on with

them while they were going through it. Its all about educating

yourself so you can better help your child. I was not offended at

all.I am here if you have any other questions or if you learn

anything new with her sensory issues. Im still trying to learn all I

can on that one.lol..One of the post to me had alot of sites to go to

on this disorder. ttyl Becky (Hailey 5)

& gt;

& gt; First let me say that I apologize if I offended anyone by asking my

& gt; previous questions in regards to certain behaviors being related to

& gt; MDS. I think that perhaps I could have asked my question in another

& gt; way or explained myself and my thoughts a bit more. I did not

intend

& gt; for people to think that I am constantly asking myself about things

& gt; or questioning everything that Sydney does and attempting to see if

& gt; it relates to her having MDS because that is not the case. I think

I

& gt; am very inquisitive by nature and as a first time mom having a

& gt; daughter with MDS poses some challenges. Being a mom comes with

it's

& gt; own challenges but it is also a different sort of challenge having

a

& gt; child with developmental delays. I am totally up for the challenge

& gt; and I continue to do a lot to keep her stimulated and to teach her

& gt; new things each day.

& gt;

& gt; Before she was born, I was told that she would not be capable of

& gt; doing a lot of " normal " things like other children. That was

hurtful

& gt; but I knew that I would love her no matter what. Now that she is

here

& gt; I feel like I can't believe people can talk so negatively about

& gt; people with DS. I feel that my daughter is doing very well despite

& gt; her delays. She is very smart, active and determined.

& gt;

& gt; I am a psychology graduate so I guess I am constantly searching for

& gt; answers as to what drives the actions of individuals. I know that

& gt; there are certain things that are characterstic of other children

who

& gt; are on the Autism spectrum for example or children with Pervasive

& gt; Developmental disorders in general or even children with Reactive

& gt; Attachment Disorder and the list goes on and on. As a mother I just

& gt; want the best for my daughter and I have provided her with many

& gt; resources such as PT and ST. I plan to continue to provide her with

& gt; resources to enhance her growth throughout life.

& gt;

& gt; I was just wondering if certain behaviors like being easily

& gt; frustrated could be connected to her speech delays because I know

she

& gt; understands a lot but she is not able to communicate verbally yet

and

& gt; I sometimes wonder if that could contribute to her frustration at

& gt; times. With that said I was just inquring to see if I should be

doing

& gt; anything more to help her in order to attempt to prevent her from

& gt; becoming so frustrated. It is hard to see her go through those

times

& gt; when she becomes frustrated. And since she is my first child I

really

& gt; have nothing else to compare her to.

& gt;

& gt; Again, my post had no negative intent. I felt the need to explain

& gt; more and apologize. As I re-read it I understand that people may

take

& gt; my comments the wrong way. I am just trying to help my Sydney as

best

& gt; I can and I wanted to hear stories that may be similar out there

that

& gt; is all.

& gt;

& gt; Thanks,

& gt; Carmen

& gt;