Why this mom of a kid with autism is grieving a life her family will never have

The mother of a child with severe autism talks about special needs parenting and the grief, overwhelm and isolation she experiences.

Photo: Finding Cooper's Voice via Facebook

Parents of children with severe disabilities often feel tremendous pressure to soldier on in silence. Sometimes their extreme parenting experiences seem too scary or unrelatable to share with loved ones. They may fear making their extended family worry too much, or dread hearing well-meaning friends minimize their child’s behaviours, question diagnoses or look for silver linings. But really, what these parents want is to speak their truth and be heard.

In a Facebook video post that is going viral, Kate Swenson—mother of Cooper, a nonverbal 6-year-old with autism, and Sawyer, a neurotypical 4-year-old—gets real on what it really means to be the parent of a kid with significant special needs. She shares what it’s like to grieve for the life that her family will never have. In the text introducing her video she writes:

“I’ve grieved changing my almost seven-year-old’s diapers and watching my beautiful boy self injure himself. And injure me. I’ve physically restrained him. I’ve rocked on the floor with him. I’ve rode the whole roller coaster of grief dammit.”

In the video itself, Swenson stresses her love for Cooper and her full commitment to his happiness and health. She then goes on to speak frankly about what it’s like to be unable to do the simplest things outside the house with both sons, because of the severity of Cooper’s condition and the hypervigilance required to keep him safe (children with autism can be prone to take off without warning). She also talks about the heartbreaking point her family has reached, where they no longer have “buttoned-up, optimistic answers” to people’s anxious questions about their family’s future.

It’s an uncomfortable topic but a vital conversation. In the hundreds of comments following the post on Swenson’s Facebook page, Finding Cooper’s Voice, parents of kids with severe disabilities have been expressing how they recognize their own struggles and are grateful for the raw honesty:

We identify with all you say… tku for saying it out loud.

   illustration of child with autism holding parents hands    
   Living with autism

I think the grief changes with each new season. My kids are teens and now I’m grieving not having typical teen experiences, knowing their adulthood will be very different than the norm and the thought of caring for them into old age.

Kate, you are talking to me. Our family lives this, too. It is so hard, and isolating to miss out on so much… I want to do things as a whole family.”

We salute Swenson for sparking this conversation. We hope it will encourage parents in the trenches who are feeling isolated and distressed to talk about what they’re going through and reach out for support. And we hope that those privileged enough to be chosen as confidants will listen with compassion and without judgement.

Read more:
Our Autism Story: the tough decision we made
How to be friends with a child who has autism

 

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