“What’s wrong with her?”
“Why is she hitting her head?”
“It’s not like she understands.”
“I could never do what you do.”
“Isn’t she too old to be carried?”
“It takes a special mom to have a special child.”
“She will grow out of it.”
Benign phrases, really. Face value, they are not hurtful. They do not cause pain. They could even be said out of kindness.
Here’s a hint: Don’t ever say them to a mom of a child who has special needs.
Even if you are family.
That mom has battled doctors, the school system, the insurance company and her own fears. She doesn’t need to fight you as well.
This is what a special needs mom needs to hear:
“Let me take you out for coffee.” (better yet, a Pinot Grigio)
“I’m at the liquor grocery store. What can I pick up for you?”
A lot of times it’s not the well-intentioned friends/family that hurt the most. It’s the student in the classroom. It’s when you take your child to a birthday party and the other kids barely acknowledge your child. It’s the friend that says, she’s come so far…but…
It’s the family member who takes their struggle with potty training and tries to relate it to your struggle with getting your child to look at you.
Sometimes finding common ground isn’t the answer. You do not need to empathize, you just need a friend to listen. To ignore your child’s temper tantrum and just carry on a conversation.
You need that same friend to tell her child that it is not okay that to say X or do Y just because their “friend” “doesn’t understand”. That friendship means even when your friend doesn’t understand, you protect and defend them.
There are so many phrases a special needs mom would love to unhear.
And so many phrases she would love to put on repeat:
“Wow, she works so hard.”
“Listen to how she talks!”
“Can you believe how far she has come?”
“You must be so proud.“
I am proud, of everything Bridget has accomplished. I am thankful, that her friend tells other children that Bridget isn’t broken. I am fortified when a friend understands that this life is hard but no less difficult than raising her typical sister. I am stronger because I have the compassion and understanding of friends who welcome Bridget into their lives, no questions asked.
I am grateful that my village surrounds me in phrases I need to hear, and limits the ones I wish were never uttered.
I wish all my special mommas had that village.
This post originally appeared on Diagnosed and Still Okay. It has been reprinted with permission.
Kerri Ames is the mom of two beautiful girls, who writes and speaks about navigating the unexpected life that happens when your child is born with a rare genetic syndrome. After a long journey, her daughter was finally diagnosed with PACS1 in 2014. PACS1 is so rare that when Bridget was diagnosed she was one of only six in the world. Today she is one of 32 and Kerri is working with other parents to create more research and treatments. A featured speaker at Listen to Your Mother and roundtable discussion at BlogHer, Kerri found her voice and uses it to advocate for all children. Her blog is Diagnosed and Still Okay and you can find her on Twitter.
God bless you Kerri and Bridget, Pinot Grigio this weekend Kerri. Congratulations
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