Re: Reaction to the reponse from DSA -UK

[Guest guest]

In a message dated 5/22/01 2:10:32 AM Eastern Daylight Time, jonas359@...

writes:

<< I am afraid the visit is going to be a real reality check I may not be

ready for. I also do not wish to lose any of the hopes we have for the

highest possible level of functioning for Jonas. >>

Hi Barb:

Don't worry about your visit to the down syndrome clinic, it just may give

you reassurance of how well Jonas is developing. My daughter , now

7 yrs old was followed by a developmental pediatrician at a down syndrome

clinic in our University Hospital until she was 5 years old. I just stopped

going after that time.

In trying to think back to that time, we brought to her first visit

when she was about 6 weeks old. We had just had her evaluated for early

intervention and really didn't pay much attention to the mosaic factor. We

expected all the delays associated with downs. The developmental

pediatrician who followed was so wonderful, not at all like the

genetic doctor who visited me in the hospital the day after was

born and told me that raising this baby would be totally different than

raising my son. How wrong she was!!!!!!!! The developmental Ped. was always

amazed by how well was developing and was very positive. She

became an excellent resource for us as far as health concerns and making sure

had all the appropriate screenings necessary for kids with downs

and well as another check to make sure her development was on track.

I hope you will meet with someone as supportive and positive as Dr. Quinn was

to us. Try not to worry about it. There is no harm in covering all the

bases by going to a down syndrome clinic, even if Jonas is developing

completely normal. It doesn't mean you have given up your hopes and dreams

for his future. If it does turn out to be a horrible experience you don't

have to go back for a second visit.

Let us know how it goes.

ann (Mom to , mds 7 yrs old and 11)

[Guest guest]

Barb, I too was a little disapointed in the lack of support from the DS group. I have found even in speaking with them over the phone that when MDS is mention the door shall I say shuts. I haven't found much support at all in any area regarding MDS. It really is a shame since we are only trying to follow any avenue to help our children. You would think that they would be more the willing to give any suport they could. Oh well so much for my rambling. ( mom to Kaelah 8mos mds )

[Guest guest]

Hi everyone, just wanted to let you all know the National Down Syndrome Congress here in the USA is being very helpful to us and has offered to give us all the advice, support and legal help, all for free, that we will need to set up as a nonprofit parent support group. They have been so kind and so helpful-they really care. Sharon W mom to MDS 14, DS 13, and Tommy 9

[Guest guest]

Yeah. It's my understandng that the DSA is a great group for research, advocacy, resource in a more professional way, but that the NDSC is far better in terms of family support. I'm glad NDSC is supportive; they'll be a great group for us.

Beth

Re: Reaction to the reponse from DSA -UK

Hi everyone, just wanted to let you all know the National Down Syndrome Congress here in the USA is being very helpful to us and has offered to give us all the advice, support and legal help, all for free, that we will need to set up as a nonprofit parent support group. They have been so kind and so helpful-they really care. Sharon W mom to MDS 14, DS 13, and Tommy 9 Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com*************************************************NEW MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

[Guest guest]

I know how you feel. I have not gone to any down syndrome programs or

workshops for fear of seeing others with downs. It is pretty obvious to

us now that Sierra is older, that she has DS. I know what you mean about

not fitting in. We were told at 8 mos. gestational that she would be

born with MDS. It wasn't till Dec 2000 (at 23 mos) that we were told she

had full downs. I don't know where we fit into the picture anymore

because she also has so many complex cardiac/feeding issues that I've yet

to meet someone else with. How much is related to downs, (although the

heart defects were from downs) we don't know. At this point, I'll take

any advice from others, regardless of diagnosis. When we were told she

had full downs, I felt like all our hope was gone. But over time, I've

come to terms with it and am able to accept her for who she is and what

she alone will accomplish and not compare her to others with ds/mds.

give yourself time though to work this through. Don't feel ashamed that

you don't want to meet with others. This is part of the healing process.

Keep whatever hope you have alive and know in time that hope won't die,

regardless of the diagnosis; it may just change a little. Hope this

helps!

Kris mom to Sierra 28 mos. CAVC/ToF with PS/VSD/valve regurg/LA

compressing esophagus/silent aspiration/slow motility of lower

esophagus/ds 12 and 9 on june 1

[Guest guest]

Sharon,

I was wondering if you had contacted NADS(National Association for Down Syndrome) for advice support and other help. We are part of that group in Illinios, and they have given us much support and advice.

Re: Reaction to the reponse from DSA -UK

Hi everyone, just wanted to let you all know the National Down Syndrome Congress here in the USA is being very helpful to us and has offered to give us all the advice, support and legal help, all for free, that we will need to set up as a nonprofit parent support group. They have been so kind and so helpful-they really care. Sharon W mom to MDS 14, DS 13, and Tommy 9 Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com*************************************************NEW MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

[Guest guest]

Sharon, Amen! So glad to hear anytime about people trying all they can to help other people who reach out to them. I think someone in this universe is calling us all to do the same. Barb Martz, Jonas' Mommy Re: Reaction to the reponse from DSA -UK Hi everyone, just wanted to let you all know the National Down Syndrome Congress here in the USA is being very helpful to us and has offered to give us all the advice, support and legal help, all for free, that we will need to set up as a nonprofit parent support group. They have been so kind and so helpful-they really care. Sharon W mom to MDS 14, DS 13, and Tommy 9 Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com*************************************************NEW MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

[Guest guest]

I talked with the National Down Syndrome Congress and they are very helpful, they told me of the two organizations they are the one to help parent groups form. The group you are talking about, I was told, has more to do with resource and legal issues. But if you can get any more help from them that would be great too. Take care and have a sunny day, Sharon

[Guest guest]

>When we were told she

>had full downs, I felt like all our hope was gone. But over time, I've

>come to terms with it and am able to accept her for who she is and what

>she alone will accomplish and not compare her to others with ds/mds.

You know, I have come to the realization that Downs is not a dirty word. It

is ok to say. I tend to agree with the NDS organization that MDS is still

Downs, but not in the sense that I am giving up hope. We need to remember

that within both of these groups there is such a wide range of abilities

that there is no reason to give up hope even if your child has full Downs.

These kids are truly amazing and it was my own ignorance that kept me from

realizing it until my precious Ben was born. Just a thought.

Carol

mom to Ben 2 MDS, and 4 sibs.

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[Guest guest]

Hi,

on a similar theme to this, I took Dan for his paed. review

yesterday and she seemed at a loss as to how to deal with him.

She kept saying if he was full DS then he would need this or that

check but as he was mds she didn't know if it was neccesary. She

put his height and weight on normal growth charts etc. She has not

had a child with mds in her care previously and I think is unsure as

to whether they are the same as DS or not. Seems to me there is

a real need for the medical profession and support charities to get

a better understanding of what it is to have mds e.g. via the

convention.

best wishes and for once we are having glorious sunshine in

Northern Ireland

mum to Dan (2, mds) and two others