The Shift From “Me” Focus

I read a good blog post recently about a mother's trials raising a child with autism.  The author was taking issue with those who claim autism is a gift and not a disability as she recounted how difficult their lives have become.  

“I think this mother is selfish,” was my daughter’s first observation. “She thinks raising this child is about her, but it isn’t.”

Entering the Maturation Fast Lane: What the Shift Looks Like

I was startled by my daughter’s comment. I reflected on the parents I have met raising children with Down’s syndrome. Not once has the word “selfish” ever occurred to me in describing those parents. But I also can only remember those parents telling me excitedly about milestones their child had achieved, or difficulties their child was facing. Perhaps these parents were “me focused” when they started their journeys, but now, their devotion and commitment were enviable character traits that causes casual onlookers like myself to drop to our knees admitting we are not worthy in comparison.

Out of curiosity, I had my 23 year old daughter with hidden disabilities read the post and share with me her insights. “I think this mother is selfish,” was my daughter’s first observation. “She thinks raising this child is about her, but it isn’t.” I saw pain in her expression.

At first, navigating the unrighteous judgments leveled against us as parents raising children with hidden disabilities (including accusations of selfishness) can knock us off balance. We are still fighting our own internal vows about child raising, what medicinal intervention, nutrition and accountability will look like in our homes. Our own blame-based behavior models may still be intact, not fully grasping the impact neurology has upon our challenging child. But once we topple those idols in our minds, we enter the maturation fast lane. It’s no longer about us, our ideals, or the impression our parenting (or even our advocacy efforts) make on another. 

Our focus shifts to our child whose struggles may impact them for a lifetime.

• What language choices empower my child the best? 
• How can I shield my child from unrighteous judgements? 
• How can we, as parents, use our own transparency, honestly and vulnerability to both protect and advocate for our child? 
• How can we obtain the best interventions in spite of our limitations? 
  

The day will come when our children grow up and read everything we wrote about how difficult it was to raise them. They already fight self loathing and feelings of worthlessness; after all, according to the other voices in their lives, they do not measure up.

Our Children Are Worth Every Ounce of the Effort Expended

I won’t go so far as to believe the author of the post is selfish. In fact, we stand side by side facing similar hurdles, doing the best we can, and offering our insights to others. I stand in her defense, especially knowing she has written many posts ministering to the needs of her readers.

I won’t go so far as to believe the author of the post is selfish. In fact, we stand side by side facing similar hurdles, doing the best we can, and offering our insights to others. I stand in her defense.

I believe her intent was to offer empathy to other struggling parents who are indeed impacted by raising children who present profound challenges to entire families who struggle to cope with the demands. The fact that in her own need, she is willing to invest in the lives of other parents tells me she is focused on others, in addition to her children, and not on herself.

But additionally, I will take my daughter’s comment to heart, remembering that I am here to teach my children that they are worth every ounce of effort expended on their behalves. It’s not about me, no matter how much raising my children with hidden disabilities impacts me. 

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