“Penny has sensory processing disorder.”
I remember saying this one simple sentence to family and friends shortly after my 3-year-old’s diagnosis this past fall. Every single person we told of Penny’s diagnosis asked, “What is sensory processing disorder, exactly?”
In short, sensory processing disorder (SPD) is a condition in which a person has difficulty both receiving and responding to information acquired through the senses. Every single child with SPD is different and will have different symptoms. SPD can be a stand-alone condition, but it is often diagnosed along with autism spectrum disorder or ADHD. In our case, our daughter does not have autism or ADHD, both of which can make the diagnosis of SPD even more confusing.
Most people don’t know how to handle a condition they’ve never heard of. At times, I’ve been frustrated by the things people have said to me, to my husband, and especially to my daughter. My hope is not to shame others, but to educate people on what SPD is and the appropriate way to respond to caregivers and children with sensory issues.
The following are seven things that I, as a sensory parent, feel you definitely should not say:
1. “But she’s so normal.”
What is normal anyway? Can we just do away with the word normal — forever and ever, amen? You often can’t see the person’s struggle with your own eyes. That is true. However, when you tune in with your mind and heart, you will begin to see the little day-to-day difficulties that make life a bit different for a child with SPD.
When you start to pay attention, hopefully you will feel some empathy — and even curiosity. A child with SPD will require special care but does not need to be alienated. No child, regardless of ability, should be alienated. So let’s do away with categorizing children as normal and not normal. Let’s just love them and care for them the way that they need.
2. “She’s just picky/spoiled.”
The most common statement we’ve received is that our child is incredibly picky. One of our biggest challenges has been eating, and for a long time we described our daughter as “the pickiest eater in the world.” Many provided well-meaning advice about how to feed her or get her to eat a wider variety of foods, but nothing worked.
We were all missing the heart of the issue, which was not that Penny is picky, but that her senses are different from ours. How can we expect a child to eat something when her senses are being overloaded and we have no idea how the food tastes to her? We no longer use the word picky, and certainly not spoiled, but many others haven’t quite received the message. Through occupational therapy, we have seen great improvement and learned that a gentle and slow approach is best with a child who has SPD.
3. “She’ll grow out of it eventually.”
I don’t believe that there’s a cure for sensory processing disorder; however, there is therapy that can help integrate the senses and expose a child to new experiences. We have noticed an improvement through therapy, but it’s still a daily challenge for her to eat, sleep, get dressed and learn new skills.
4. “This didn’t exist 20 years ago.”
The diagnosis may not have existed, but a child with sensory processing issues certainly did. How can I be so confident? Because I was a child with SPD, and I’m now an adult aware of my own sensory processing issues. I never did outgrow my SPD, but I have learned ways to cope.
As a teenager I was always known for unbuttoning my jeans; it was just one of my many quirks. Now, I understand that I needed to unbutton my jeans because I just couldn’t deal with the pressure of the button on my belly. Today, I rarely wear tight or constricting pants, but when I do, you can bet they’re unbuttoned before long.
5. “You just need to be tougher.”
Recently, my daughter and I were at the grocery store, and she took her shoes and socks off while sitting in the cart. She became very agitated when I explained to her that we had lost one of her socks.
“Penny, you’re not in trouble. We’ll just buy some new socks,” I explained.
I don’t have time to worry about every little issue that arises, and I certainly don’t have time to worry about lost socks. If you know anything about kids with SPD, you know that they sometimes hate socks and tags. If I made a big deal out of every spilled drink, every missing sock, or every meal skipped, I would have a very stressful relationship with my child.
Many think I’m too easy-going and that my lack of discipline is what has made my daughter “this way.” According to the professionals, my daughter is in the safest environment when I am relaxed and calm about the little blips in our day.
6. “My kid does that, too — and he/she is fine.”
I’m not sure why so many parents feel the need to compare their children to others’, but it happens more frequently than I’d like. I’ll admit, I was one of those parents who said to a friend: “My kid does that, too.” I have no issue with others noticing sensory processing issues in their kids.
I will often relay tools I have learned in therapy to them, to help them guide their children in the right direction.
Please know, a child with sensory processing issues will need special care and patience. Most kids with SPD are receiving therapy, and the typical “rules” or “methods” of parenting may not apply.
7. “But your other child eats/sleeps/etc. so well.”
When my second daughter was born, I compared my children all the time. My oldest was too young to understand, and I was unaware of her sensory issues at the time. Regardless, I should never have done it, and I formed a bad habit of inwardly comparing them.
But once my second daughter started eating and sleeping well, I started receiving lots of comments comparing my kids, and I realized how wrong I had been to start such a bad habit.
Typically, these comments are directed at me, but they’re often said in front of my children — and sometimes they’re even directed right at them. This, I feel, is probably one of the hardest things to hear as a parent. I do not want my children growing up around comparisons. I never want my child to attach good behavior or bad behavior to the things that she eats or the way that she sleeps. If I can suggest one thing, it’s that you should never compare siblings to each other.
There are plenty of things that you can (and should) say to sensory parents. I would suggest asking questions, showing empathy and letting them know that they’re in your thoughts. The beginning stages of a diagnosis are typically difficult for a family — and support is always appreciated.
In our family, we have chosen not to talk about sensory processing disorder directly to our 3-year-old. She is just too young to understand it, so we have not used these exact words around her. If a parent doesn’t tell you of a diagnosis right in front of his or her children, you may not want to bring up the diagnosis around them.
If you’ve read this article to the end, I commend you. It means you’re a caring parent and/or friend. And even if you have said some of the things mentioned above, the fact that you want to educate yourself is a huge step. There’s no shame in saying the wrong thing if you don’t know any different. But now that you do know different, be different.