I sit here and read this and I cringe for the families I know, some who may still read this list, who have a son with a variant with some form of mental retardation. Ever stop to think how all of this makes them feel? That their son is somehow not as worthwhile a human being as others with this anomaly because he has more severe challenges in this area? Why are we perpetuating the stigmatism that having mental retardation is bad or awful? It is in the undertones here for sure and not in those words, but the sentiment is there. The fear is there.

This family may very well have a child with none of the challenges or one with all of the challenges. He may well have some form of mental disability. He may not. In that case, it is wise to use caution in telling folks what or what will not be their future. I have met many XXY and variants. Some have severe challenges, some have few, some have none.

You can only share your experiences and honestly say there are some who have more challenges and some who have less. It is just as much an error to say to a family your son will not have mental retardation as it is to say he will. The truth is, no one knows.

I tend to never paint a rosy picture or a dire one. Just a sharing from the heart that no matter what your child is or is not, are you prepared to love him and accept him unconditionally for who he is?

I always cringe when people "counsel" expectant parents with an all rosy picture in a misguided attempt to save a life. People on this email list will breeze through this couple's lives. The only ones who will be there day in and day out and have to live with this decision is the family. Truth is, the way ahead for them is not an easy one and they have to find the courage and the strength to choose to walk it. Pushing them on the path of our choosing is not fair because none of us will be there with them day after day.

The family needs good solid updated information of the sort I am sure AAKSIS can provide. They need to hear form those who have shared, and they also need to hear from those who have a son with a variant who does have some sort of mental retardation and more severe challenges. Then they need counseling from trained folks who can help them plan for the worst, hope for the best, and cope with whatever comes their way.

Carol