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Ask The Professional

By Etty Terebelo OTR

Dear Etty,
Can you tell me if there is any physician who specializes in children with Down syndrome and cutting edge research?

Mr. S. New York


Dear Mr. S.,
What a simple question. Believe it or not I have never been asked this before. So I got on the internet, made some calls and this is the result. Doctor George Capone from the Kennedy Krieger Institute in Baltimore Maryland is supposed to be "the man".  The telephone number for the Kennedy Krieger Institute is 888- 554-2080. I hope you will find this information informative.

Etty

Dear Etty,
This may be a bit presumptuous as my grandchild was born only nine days ago. However, I am only asking out of my lack of knowledge or rather ignorance of the subject of Down syndrome. What are her opportunities for the future? For example: living independently, marriage or a job.

Mr S. New York

Dear Mr. S.,
This response should be based on your children's capabilities as each child is born with a different innate potential.  Lucky for all of us, we live in a society where adults or rather all people with handicaps are given more opportunities. Recently, an article was put out in a national magazine about four young adults with Down syndrome and their accomplishments. One was a college grad, one an actor, one ran for a public office job and the last a high school grad that was totally mainstream. This seems quite successful to me. In regards to the Jewish world certainly if one is independent enough with life's skills they might be able to marry, but I would think they would need assistant from a capable adult to sort of check in and help when needed. Obviously this depends on each individual. Otherwise there are wonderful group homes. Should you think of this as institutionalizing the individual, think again. It might be an opportunity for this adult with Down syndrome to find similar friends and be more self sufficient thereby allowing more independence. This will help her self confidence and self esteem. After all, all his sibling live in their own homes so why should she still live with her parents. Just think of it from the person with down syndromes point of view. Remember that they grow up to be social, intelligent and have emotions like you and me.

P.S. It is presumptuous, just enjoy your grandchild now and take it day by day.

Etty

Dear Etty,

One last question. Do you know anyone who has done plastic surgery to correct the facial features of children with Down syndrome and what are your thoughts on this surgery?

Mr. S. New York


Dear Mr. S,

To answer your first question, did I know anyone who did the surgery? No I do not. However if there is a reader out there who has done it or knows someone who has, please e-mail me with how it worked for you at: bata.inc@verizon.net Att: Etty.

As to my feelings on the subject, well they may be controversial but I will share them with you anyway. I am sure I will hear back from the public. I think it is an opportunity for the child. I would think it can only help, as we unfortunately still live in a society with prejudices. Once one sees a person with the Down syndrome features they usually (obviously nothing is always) behave towards the individual quite differently, usually having little expectations. Remember children with Down syndrome can excel as mentioned in the last question and answer, but only when we as a society believe in them. Making them look "normal" certainly helps others deal on a different level with these children.

Etty

Dear Mr. S,
Thank you so much for your insightful questions. May you see lots of Nachas from this grand daughter and all your future einachlach.

Etty

This article first appeared in issue 13 of DSAU

Click here to see more articles in the "General" section
Click here to see other articles in issue 13 of Down Syndrome Amongst Us


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