Why do we feel guilty?

A common theme I see among many of us parents who have a child with Down syndrome is a sense of guilt for being upset at receiving the diagnosis, at having these incorrect and stereotypical beliefs of what our child’s future would look like. I’m guilty of this too. Then today, after reading a post by a fellow blogger mom with the same theme to it, I thought about it. Why do we feel this way?

It was only 60 years ago, our grandparents or great-grandparents generation for most of us, that parents were told to put their children with Down syndrome into institutions. They were told to lock them up, hide them, feel ashamed of them. Then they fought back. “No! My child will live with me!” And so their children started going home with them, not hidden away somewhere.

It was our parents generation where they segregated children with Down syndrome from the general classroom. I remember there being a “Special Ed” classroom in my elementary school (though I don’t recall a child with Down syndrome being there while I was in school). They were put in a different classroom because they thought that is where children who were “different” belonged, that it was better for them. Now here we are fighting that belief and stating our children’s right to inclusion in the general classroom.

Just a generation or two ago, many of the programs we have now would have been seen as pointless. There was limited access to resources to help the families. Now we are able to get our children early intervention services as early as a few months old and are seeing adults with Down syndrome live independently and lead productive lives.

I feel like the fear and guilt we experience from our child’s diagnosis is rooted in the fact that most of us had limited experience with Down syndrome growing up. And what we did experience is not comparable to today with all of these new resources we have access to and the inclusion we are fighting for. Just like how we see Down syndrome is different from how our parents, grandparents, and generations past have seen it, the next generation will see it differently too. Hopefully a little less “different”, a little less “scary”, a little more inclusive.

I guess what I’m saying is don’t feel guilty for fearing what the future would hold for your child. Know it was rooted in naivety and vow to help the future generations see it differently too. Keep working to change the narrative, change the stereotype, change the world for our loved ones.


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