RE: [SPAM]Re: FW: survey

May 18, 2008

Yeah I got that impression too. Or that we were trying to " suppress" the difficulties.

I was sort of disappointed in her response to me and this one.

I was hoping that by being nice " I would catch more flies with sugar " But by NOT allowing a differentiation between their child's diagnosis and these " stressors" will skew the data big time.

I am stressed to the gills. But Sam's Ds has NOTHING to do with it.

Steph

Re: survey

Hi Kathy,

Thanks so much for the feedback. I definitely think that all the reactions I get to the questionnaires are important and I try to use the information as best I can. I know some of the questions sound negative and that is difficult. I think what sometimes gets confusing is that the questions are hard and it's the outcome that shows the positives. I certainly don't want to upset anyone with the questionnaires. I am definitely looking to use them to focus on the positives but sometimes to do that I have to ask about the difficult pieces. Much of it may not even fit for a lot of moms but, as with raising kids, there are stressors and my study is exploring that as well. My goal is to look at the strengths of the moms, I assure you of that. So, please let the people who complete the questionnaires and are questioning what the goal is know that although some of the questions may ask about difficult things, if they don't fit or apply it's a nice chance to say so and if they do fit I can look at how moms handle the stress. It certainly isn't set out to put a negative spin on individuals with Down syndrome. Please feel free to pass this along. Also, if there is more feedback I am happy to hear it. But, please know I hear your concern. I hope I'm addressing your concerns. If I can be more specific please let me know.

Thanks again,

Cristie Kathy Ratkiewicz <kathy_rcomcast (DOT) net> wrote:

Hi -

Just an fyi….several of the parents who have taken the survey felt that it had kind of an unecessarily negative slant to it. Many of us had a stressful first couple of years due to our child’s medical problems, but Ds-in and of itself- is not a huge stressor in our lives. Once the medical issues were resolved, the stress level went down considerably. We sincerely believe that our kids have had a more positive effect on our lives than a negative one. Is there any way that you can adjust your survey to accommodate those views ?

Thanks

Kathy

May 18, 2008

I thought she was saying that it was not a ‘one size fits all’,

actually….if the mom is stressed, then how does she handle that? If she is not

stressed, say that, too?

From:

DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ]

On Behalf Of Carlson

Sent: Sunday, May 18, 2008 12:55 PM

To: DownSyndromeInfoExchange

Subject: Re: [sPAM]Re: [DownSyndromeInfoExchange] FW: survey

Yeah

I got that impression too. Or that we were trying to " suppress " the

difficulties.

I

was sort of disappointed in her response to me and this one.

I

was hoping that by being nice " I would catch more flies with sugar

" But by NOT allowing a differentiation between their child's diagnosis

and these " stressors " will skew the data big time.

I

am stressed to the gills. But Sam's Ds has NOTHING to do with it.

Steph

-----

Original Message -----

From: Carol in IL

To: DownSyndromeInfoExchange

Sent: Sunday, May 18, 2008

12:39 PM

Subject: [sPAM]Re:

[DownSyndromeInfoExchange] FW: survey

One could

*read* this to mean that we are in denial to the 'difficult' parts and she is

trying to get us to express them. How could we have 'strength' to overcome

them if they weren't there in the first place?

Not sure, just asking.

Carol in IL

AIM doihavtasay1 GigaTribe doihavtasay

Mom to seven including

, 7 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.

My problem is not how I look. It's how you see me.

Join our

Down Syndrome information group -

http://health.groups.yahoo.com/group/DownSyndromeInfoExchange/

Listen to

oldest dd's music http://www.myspace.com/vennamusic

Re: survey

Hi

Kathy,

Thanks

so much for the feedback. I definitely think that all the reactions I get to

the questionnaires are important and I try to use the information as best I

can. I know some of the questions sound negative and that is difficult. I think

what sometimes gets confusing is that the questions are hard and it's the

outcome that shows the positives. I certainly don't want to upset anyone with

the questionnaires. I am definitely looking to use them to focus on the

positives but sometimes to do that I have to ask about the difficult pieces.

Much of it may not even fit for a lot of moms but, as with raising kids,

there are stressors and my study is exploring that as well. My goal is to look

at the strengths of the moms, I assure you of that. So, please let the people

who complete the questionnaires and are questioning what the goal is know that

although some of the questions may ask about difficult things, if they don't

fit or apply it's a nice chance to say so and if they do fit I can look at how

moms handle the stress. It certainly isn't set out to put a negative spin

on individuals with Down syndrome. Please feel free to pass this along. Also,

if there is more feedback I am happy to hear it. But, please know

I hear your concern. I hope I'm addressing your concerns. If I

can be more specific please let me know.

Thanks

again,

Cristie

Kathy Ratkiewicz <kathy_rcomcast (DOT) net> wrote:

Hi

-

Just

an fyi….several of the parents who have taken the survey felt that it had kind

of an unecessarily negative slant to it. Many of us had a stressful first

couple of years due to our child’s medical problems, but Ds-in and of itself-

is not a huge stressor in our lives. Once the medical issues were resolved, the

stress level went down considerably. We sincerely believe that our kids have

had a more positive effect on our lives than a negative one. Is there any way

that you can adjust your survey to accommodate those views ?

Thanks

Kathy

May 18, 2008