What not to say to a parent of a child with special needs
While well-intentioned, these phrases leave me feeling misunderstood
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“God gives special kids to special people.”
“God only gives you what you can handle.”
“You must be so strong.”
“It could be worse.”
“I could never do it.”
These are phrases I have heard countless times throughout my journey as the mother of a child with special needs. They are usually spoken with good intentions, often by people who genuinely want to offer comfort, encouragement, or admiration. And I understand that. I recognize that sometimes people simply don’t know what to say to a parent of a child with special needs.
Perhaps someone who is deeply religious finds comfort in believing that God had a specific plan for their family. Perhaps another parent appreciates being told how strong they are. But for me, these common phrases never sat quite right. Whether directed toward me and my late daughter, Cammy, who had Rett syndrome, or another special needs parent, they often left me feeling misunderstood.
I learned to smile and respond with a polite “thank you” or “I guess so” when someone made one of these comments after meeting Cammy. But what was going through my head was often very different from what came out of my mouth.
How I interpret these phrases
“God gives special kids to special people.”
I have never considered my husband or myself to possess any extraordinary capabilities that would make us more deserving or better equipped to raise a child with special needs. We don’t have special powers. We weren’t given a handbook, an extra dose of patience, or some hidden reserve of strength. We were simply parents who loved their daughter more than anything and learned to navigate a life we never anticipated.
“God only gives you what you can handle.”
I’m not sure I believe that. What happens when you reach the point where you can’t handle any more? What happens when you’re mentally exhausted, emotionally depleted, and physically running on empty? There were plenty of moments when I didn’t think I could handle another appointment, another setback, another sleepless night, or another heartbreaking realization about what Rett syndrome had taken from Cammy. Sometimes I wasn’t handling it. I was simply getting through it.
“You must be so strong.”
Please define strong. Was I strong when I was in and out of depression? When I was mentally and emotionally broken? When my body was physically beaten down from years of caregiving? When I cried in private because I didn’t want anyone to see just how hard things had become? I didn’t always feel strong. In fact, there were many times I felt like I was barely holding myself together. What people saw as strength was often just survival.
“It could be worse.”
For a long time, I would have disagreed. Having a daughter with Rett syndrome was difficult, heartbreaking, and unfair. But I eventually experienced something I never imagined could be worse. Cammy died on Dec. 13, 2023, from complications of Rett syndrome. We did have worse. I lost my daughter. I lost the future I imagined for her and the countless milestones I wanted to watch her reach. So, please, don’t tell a parent it could be worse. They may already be living through something they never thought possible.
“I could never do it.”
Yes, you could. Not because you’re stronger than you think, not because you were specially chosen, and not because you have some extraordinary ability. You could do it because you would have no other choice. When it’s your child, you show up. You do whatever needs to be done because that is your child, and you would do anything for them.
I don’t share these thoughts because I believe people are intentionally hurtful. I share them because words matter, especially when spoken to parents who are navigating a life that looks very different from the one they imagined.
Sometimes the best thing you can say is simply, “I don’t know what to say, but I’m here.” Listen without trying to fix anything.
Parents of children with special needs aren’t superheroes. We aren’t saints. We aren’t specially equipped for heartbreak. We are moms and dads who love our children, experience exhaustion, feel frustration, grieve losses, celebrate victories, and do the best we can with the circumstances we’ve been given.
Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.
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