Angela Berg-Dallara says in her book; The Dark Side of Autism: Struggling to find Peace and Understanding When Life’s Not Full of Rainbows, Unicorns and Blessings, “It feels a little odd to be around people with neuro-typical children. I can’t describe the feeling exactly. The feeling is a combination of envy, jealousy, perplexity and a drop of awkwardness. I hate the way I feel around normal children, so now you can add shame and guilt to my list.”
It’s not just parents of children with autism who feel this way. As parents of children with chronic illnesses, disabilities and / or mental health illness, whether it’s autism, diabetes, cystic fibrosis, cerebral palsy, bipolar disorder or one of the myriad other ongoing mental and physical issues, we have similarities and differences from parents of more typically developing kids.
One common experience for all parents is to fantasize about what their kids will be, or do, as they grow up. But, as parents of atypically developing kids we experience the loss of the dream and need to find a “new normal.” This loss manifests itself in various ways over time and whether we like to admit it, seeing “neuro-typical” children and families can often produce envy, and concomitant feelings of guilt for having those feelings. We are comparing our children to others. In our minds other families, whose children may experience common viruses, or broken bones, have it easier. And some of them do.
Not only do we grieve the loss of the dreams for our children but woven into that dream was one for ourselves as parents and families. As our children grow, and don’t make the milestones others do, of talking, or walking, or making friends, or whose lives will be shortened by their disease or its treatments, we are likely to revisit the grief, anger, and envy, in many different situations over time.
We are also angry and hurt when those with neuro-typical children are insensitive to our needs and realities. We may get past grieving the fact that our child will not play soccer, that we won’t be soccer moms or dads. Then too, we miss the friend who used to make us laugh but who could never sit with us when we were sad. So often, we end up letting go of friendships, and sometimes family member themselves, that we had before our children were born because they just don’t understand, or try to understand, what we live with on a daily basis. We grieve those losses too.
As a mom of an autistic boy I know, says, “I live in the deep end of the pool with other people who have similar life experiences, and I can go to the shallow end when I have to, but I don’t live there.” By which she means, that most of us with atypically developing children end up finding supportive communities of like-minded and similarly experienced families. It is easier and more satisfying. We don’t have to take care of others feelings, those who feel awkward around us because they don’t know what to say or how to include our families in their lives. We can share our feelings of envy, fear and anger and know we will be understood, that while we may feel guilt and shame for those feelings, they are typical feelings.
And even with all these difficult experiences and feelings, as we come to accept or accommodate to our given realities, most of us come to value the differences in our children, the richness they bring, and the awareness of what is really important in our lives.