To the Person Who Doesn't Understand My Child's Sensory Issues

Dear Well-Meaning Person,

When I talk about my daughter’s sensory issues, I know you think you get it because you have to cut the tags off of your clothes or you may have certain smells that bother you. I want to educate you by sending you information via email or recommending a book I have read, but I don’t. I don’t because I worry you won’t even read what I have sent, and that makes me sad. I love my daughter very much and wish others cared about her as much as I did.

In reality, I don’t believe anyone will ever love my daughter as much as I do. I don’t think others will understand that she chose to wear her shoes without socks because she couldn’t get the seam just right so that it did not bother her sensitive toes. No one quite gets that when my husband wants to have fish for dinner, he must cook it outside because the smell is such an assault to my daughter’s sense of smell. Try as they might, not even her own classmates understood why she wore the same dress every day for six months. Instead they chose to call her homeless and tease her relentlessly. Not one adult at her school took the time to ask about this. If they had, I would’ve told them that was the one dress my precious child knew would feel good on her sensitive skin.

Even the school psychologist laughed when she discovered that my daughter was sniffing her. At my daughter’s IEP later that month, I informed this professional that even though my daughter is repulsed by many smells. She seeks out how others smell. In her mind, if you smell good, you must be a kind person.

To the person who wonders why my child only eats a limited number of foods, I would say it’s because her sense of taste is also affected. She is afraid to try new foods because she is fearful that they might not taste good. You tell me all kids have a limited palate. You tell me it will get better. To that I ask, “Do other children become so anxious around food that they get sick with worry?”

I’d love for you to know that things are so much better than they used to be. Right now my daughter has a closet full of clothes she actually wears. I’m happy to report my daughter now wears holes in her socks. We actually have several pairs that are missing their partner. My daughter has learned there are other, more socially appropriate ways to tell if a person has a kind soul. Recently my dear child is becoming more willing to try new foods. She’s learning some foods taste better than she thinks they will. If they don’t, there are ways to spit the food out gracefully. She’s also learned that sometimes we just chew and swallow fast. We keep a tall glass of water handy for the times we need to wash down food that doesn’t taste as good. (By the way, my husband still has to cook fish outside.)

Why do I think you should take the time to learn about my child’s sensory processing sensitivities? Not just because it’s the compassionate thing to do, but because one day you may have a child or grandchild with these same issues. If you take the time to educate yourself now, then when you encounter a loved one with similar challenges, you will know how to help them.

If you want to be supportive and show you take her sensory sensitivities seriously, you can say things like, “What can I do to help?” You can offer to educate others, like the teachers who could’ve educated the other students as to why my daughter only wore a blue dress. You can stand up and tell my child, “It’s OK. We still love you.” Another thing that would be really helpful is to ask what foods my child likes, and then at a gathering, provide those foods along with your regular fare.

It would be helpful if people just said, “That must be rough,” followed by a hug. This can be said to me or my daughter, depending on the circumstance.

Follow this journey on Raising a Drama Queen and like Cate’s page on Facebook.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.