Hello...

I think informing people about trisomy 21 is a very wonderful thing to do and I wish you luck on your video. I am an adoptive parent of a child with trisomy 21 and have heard of situations just as you describe in regards to one parent refusing to stay with another and adoption being the result. It is so horribly sad .

Although I love the idea of showing children who are "high functioning" as a way to offer people hope I also do not always agree that this is the right approach to take as I think sometimes we send out a message that can be detrimental to very cause that we are fighting for. I think its important to maintain a balance of varying abilities and achievements in those with trisomy 21. There is a lady at our local college who works cleaning up tables. She sometimes needs some direction and lives semi-independly. By society's standards she may not be "successful" but she loves her job and approaches each day with such energy that people who attend the college actually seek her out when they are lunching there because they need to be around her energy. I've known non-verbal adults with trisomy 21 who swim the length of the pool during Special Olympics. Their coordination is not completely on and the task is grueling and long but they get out of the pool as if they have won an Olympic Gold Medal and seem to embrace life with all their being as they jump up and down with excitement at their accomplishments.

I think its important to change people's views but I think its broader then sending the message of those with Down syndrome can achieve things that society generally sees as "successes". Although I think its great to show those that society views as successful, I think its also important to show that when you have a child with a disability you come to define "success" and "perfection" differently then you did before. You grow with your child and although the future when you look at it looming ahead may sometimes be overwhelming... this moment is not and when you reach the future you will be a different person and therefore will handle it all differently. I think its important to lay the truth out there and not to set parents up for a feeling of failure when their child doesn't turn out to be one of the superstars that get displayed over and over again. Parents of children with disabilities seem to carry enough guilt without adding that to it.

I do not know what the future holds for my son. I will support and help him in anyway that I can for him to live up to his full potential but if he were not to do what some of these high success stories do, I would not want him to feel that he has somehow failed. I just want him to work hard, do his best and be kind to those around him.

I do not mean to be in any way discouraging. I just think its very important to send out a message of the value of life... all life... no matter what the achievements are and I sometimes get worried that the push to show successes based on what general society defines as success only makes the battle to ensure fair treatment of our children harder.

Monica, mommy to SIX year old (Mikey)!


















Before you criticize someone, you should walk a mile in their shoes. That way, when
you criticize them, you are a mile away from them, and you have their shoes!
~ Frieda Norris ~