Down Syndrome - Pottsville,PA

Updated on May 06, 2007
S.L. asks from Pottsville, PA
5 answers

hi I'm new to this group. I am looking for other moms who have a child with down syndrome. My son is 11 years old and has down syndrome,alot of behavioral problems and adhd. I'm involved in just about everything thats out there for help but nothing they are saying seems to be helping. I'm hoping by getting advice from other moms might help. Take care and thanks

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answers from Washington DC on

Hi S..
I do not have a child w/ DS, but my Uncle Eddie who will be 49 in July does. He lives w/ my cousin and her family now. I know how tough it can be believe me. I love him though and he just loves everyone, but there is the dark side also. At about 10:00 every night (and you can time it too) he gets very moody and yells at's pretty bad. We don't give him ANY kind of caffiene or sugar cause that really sets him off. I love him though and you just have to remember that he is one of God's special people and has a one way ticket to heaven.
best wishes.
If you would like to talk more lemme know. :)



answers from Pittsburgh on

S. - Sheila with the Children's Hospital Down Syndrome Center is fantastic! Here is an example of things she emails... Also they have plenty of events and workshops to get involved in. My brother has downs, and although he doesn't live in Allegheny county I try to keep up with things locally.
J. :-)
I hope its ok - I'll put you in my family's prayers.

Dear Families and Friends, the implications of this recommendation by the American College of Obstetricians and Gynecologists are frightening. We all have a responsibility to fight this prejudice about our loved ones who have Ds.
Sheila A. Cannon, MEd
Down Syndrome Center
3705 Fifth Avenue
Pittsburgh, PA 15213
###-###-#### FAX
[email protected]

Subject: NDSC News Release
After careful review of ACOG Practice Bulletin 77, the NDSC has issued the following statement:
Contact: David Tolleson
770/604-9500 January 23, 2007
ATLANTA – The National Down Syndrome Congress (NDSC) condemns recent recommendations by the American College of Obstetricians and Gynecologists (ACOG) that convey tacit approval for terminating pregnancies where the fetus has Down syndrome.
The recommendation for first trimester screening of all pregnant women is a change from the current practice of primarily screening women over age 35 who have a higher probability of having a baby with Down syndrome. Women under age 35 are also being screened, often without their full knowledge or consent.
Among the concerns cited by the medical doctors comprising NDSC’s Professional Advisory Committee:
The primary medical reason for first trimester screening is to encourage earlier diagnostic testing in “at risk” pregnancies, in order to facilitate early terminations. Other reasons for prenatal diagnosis, such as hospital selection and delivery management, do not require first trimester testing.
Based on ACOG’s figures, the recommended screenings will produce numerous false positives, potentially leading to unnecessary patient distress and possible termination of pregnancies where medical concerns do not exist.
All screening or diagnostic tests need to be fully explained to patients, who should be provided the opportunity to decline or give their informed consent for testing. If patients decline certain tests, physicians and other medical personnel should respect the individual’s wishes and not overtly or covertly pressure patients to undergo undesired screenings.
Recent studies by Dr. Brian Skotko, published in the American Journal of Obstetrics and Gynecology (2005) and Pediatrics (2005) note that many doctors are inadequately prepared to deliver a diagnosis of Down syndrome, and often use negative language or out-of-date information. ACOG’s recommendations do not address this situation, nor how it will be corrected.
Studies have shown that parents and siblings of children with Down syndrome overwhelmingly report that having a family member with that diagnosis has been a good situation. Early intervention and inclusive education have led to largely positive outcomes for children with Down syndrome. It is unacceptable that many obstetricians present negatives -- and seem to emphasize pregnancy termination -- rather than reporting the facts, which paint a much more positive picture.
Parents who receive a diagnosis that their fetus has Down syndrome should have the opportunity to meet a family that includes a person with the syndrome, a move in keeping with the spirit of the Kennedy-Brownback bill.
NDSC Executive Director David Tolleson notes that “Down syndrome is a serious diagnosis; however we have seen families thrive.” “We empathize with obstetricians who fear ‘wrongful life’ lawsuits,” Tolleson adds, “but the cure for that problem is tort reform, not preventing the births of a whole class of people.”
Jeff Mattson, a man with Down syndrome, agrees: “People with Down syndrome want to live life to the fullest.”
According to Tolleson, “the NDSC is here to support doctors in delivering a diagnosis and parents through the pregnancy, birth and life of their child.”

CONFIDENTIALITY NOTICE. This e-mail and attachments (if any) are the sole property of Children's Hospital of Pittsburgh and may contain information that is confidential, proprietary, privileged or otherwise prohibited by law from disclosure or re-disclosure. This information is intended solely for the individual(s) or entity(ies) to whom this e-mail or attachments are addressed. If you have received this e-mail in error, you are prohibited from using, copying, saving or disclosing this information to anyone else. Please destroy the message and any attachments immediately and notify the sender by return e-mail. Thank you.



answers from Philadelphia on

hello, i do not have a child with down syndrome but i have worked with the mentally and physically challanged since 2002. i worked for the training school of vineland and also for easter seals of nj. i just want u to kno that i m here if u need 2 talk or just need a friend.



answers from Johnstown on

Hi S.
I'm no expert on down syndrome, however I do work for my county's MH/MR. You said you are connected with everything, however, are you linked to your local MH/MR program? If not, that's where I would start. It's possible they can connect you to the right people and provide some assistance in the home and possibly the community. I don't know where you're from, or I could possibly look up some things for you. Does your son currently take medication for the adhd? I would love to explore services for you, if you are interested, and not already receiving them. For now, all I can say is continue donig the best you can, and always have patience. Take care



answers from Washington DC on

S., Hi, I have four little girls. My oldest is four and she has Down syndrome. She doesn't speak yet, but otherwise is doing great. While I don't have specific help for you, I can tell you that we have had great luck with The National Down Syndrome Society and the National Down Syndrome Congress's yearly conventions. They have wonderful classes and advice from experts in all sorts of fields. You didn't mention where you are from, but I know that a lot of the counties have great support groups, too. You can also call your local ARC, they've been helpful. Mostly I find that talking to other parents with kids your own age helps me. So I hope you can find a local group and other 11 year old boys. Here's a list of resources in Maryland from NDSS Good luck

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