I think that sometimes people lose sight of the fact that society often feeds unhealthy behaviors surrounding disability.

I’m copying a part of my email post below.

“I agree that Grief is natural for a parent. A parent has to grieve not their child, but their expectations of what could have been. It seems like one of the most active pastimes my pregnant friends have is imagining what the child they are carrying will be like.

All parents must grieve Their disappointments- be the child “typical” who turns out different than expected (maybe lower educational or career achievement, bad relationships, unexpected preferences, religious differences etc), or disabled in some way.

The problem, I think, is when the parent allows their grief to take over their entire view of their child. And when a child is disabled instead of just “a disappointment”, it isn’t just accepted in western society- It is expected! Instead of supports to help a parent through grief, there are societal reinforcements to CONTINUE grieving, even when it is no longer healthy or serving the purpose of grief.

There needs to be better emotional supports for parents who are learning their child has any disability, period. Some might not need to be as intensive- perhaps a certain disability or illness runs in the family or community- but for others, especially those for whom active acceptance will mean needing life long assistance with life skills, those supports will need to be strong. Because the sooner those supports are in place, the sooner the constructive end of the grieving process can occur.

I worked with a parent support organization for a long time that was primarily for MH families, but also- and with increasing frequency- DD families. This type of support was the number one thing that was repeatedly and consistently needed in order to help the ENTIRE family, but was harder to find than any other aspect of family care. There were families that were torn apart not because of the realities of a child’s disability, but by the emotional consequence of not having a healthy support system for parents to deal with the stresses they were facing and expectations they were having to adjust. The families that did have a healthy support structure discussed their grieving times and moving on to becoming amazingly positive and fierce advocates for at the very least their own children. ”

I hope I’m not stepping on parent toes as a non-parent here. I’m just a “lowly” auntie with a good relationship with both my own mother and my grandmother.