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10 Things a Parent of a Child With Sensory Processing Disorder Wants to Say to You

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I’d like to take a moment to reflect on a little known sensory disorder that many times coincides with autism: sensory processing disorder (SPD).

SPD involves any disorder of your senses ranging from over-sensitivity to light, smells or sound to an under-sensitivity to taste and touch. SPD can also affect the vestibular and proprioceptive systems, which control balance, movement and spatial orientation.

As a mother of a young son with SPD, I’ve come across so many people who are unsure of and even put off by his unique behavior. Below are 10 things I’d like to say to those people.

Please take a moment to read, share and spread the word. The more we educate others, the better we become at responding to these children who need us.

1. He has reasons for being fidgety.

His SPD creates an insatiable craving for tactile stimulation. He fidgets because his nervous system isn’t developed the same as yours or mine. His nerves act as a one-way street. His brain is telling his nerves they should be feeling the rigidity of the seat under his bottom, but his nerves never respond to his brain letting it know they already feel it. This creates frustration and anxiety, which leads to fidgeting. The same is true in reverse sometimes, too.  

Some sensations, though inconsequential to you or me, are overwhelming to him. The tag on your shirt isn’t noticeable to you, but for Vincent, his nerves are telling his brain a thorn is digging into his neck.

2. The noises you balk at are necessary for him.

The “inappropriate noises” he makes are repetitive and soothing. To Vincent, all the sounds you and I tune out may carry the same urgency as those we prioritize.

You hear the voice of your boss telling you the deadline for your next project. Vincent hears his teacher explaining a math problem but also hears the humming of florescent lights, the rattling of the heater, the chatter of other students, the footsteps of the aide, the cars driving by outside the window and even his own breathing. Because his auditory discernment is not as strong as yours or mine, he is unable to focus on priority sounds and, in an effort to push aside all that noise, he makes sounds himself that help drown out the confusion.

3. He is not a bad boy.

Vincent does not have bad manners. In fact, he is one of the most polite and thoughtful children you’ll ever meet. He says “Please,” “Excuse me,” and “Thank you” without prompting and is always sure to give you hugs and kisses if he thinks you’re sad. When we pick up toys at the store, he often asks if we can get things for his cousins. He is a truly loving, good little boy. His meltdowns are not the result of being spoiled, coddled or moody. They are markers for the moment his strong little heart is overwhelmed by the 24/7 job of trying to push back against a tsunami of stimulation.

4. We are not bad parents.

How often my husband John and I are looked at as if we are the root cause of Vincent’s more stressful moments. How often we are asked if we’ve tried X, Y or Z to basically force Vincent to fall into line.

We did not cause his sensory processing disorder. Our parenting styles did nothing to bring on his sensitivity to certain situations. We love our child fiercely and do everything in our power to see he is cared for, protected and loved. We may not be the most savvy parents in regards to the latest therapies available, but don’t you dare mistake our novice ignorance for bad parenting. We are fighting to make ourselves and others aware of this disorder, and we are doing all we can to give Vincent the therapy he needs to cope.

So the next time you see us in the store while Vincent is having a meltdown because the lights hurt his eyes and the cart feels especially frustrating to his backside, refrain from suggesting I stop spoiling him. I might not be so charitable in my response.

5. He hasn’t mastered personal space.

I apologize in advance. My son is going to get in your face — frequently. Because his proprioceptive system is underdeveloped, he doesn’t fully understand his own body in space. Thus, he has trouble understanding his body relative to yours. As a result, the only way he fully knows he’s close to you is if his face is touching (or nearly touching) yours. Again, since his auditory sense is sometimes jumbled, he ensures you can hear him (and he, you) by being all but on top of you for a conversation. He doesn’t do this to be rude… he does it because he doesn’t know any other way.  

We are working on this.  Please be patient with him.  

6. He loves stepping on things with his bare feet.

Owing to his intense addiction to stimulation, Vincent loves stepping on everything and anything with his bare feet. This poses quite the challenge to us because he even gets satisfaction from stepping on dangerous things. He’s broken more than one plastic toy because he craved the sensation of various objects under the sensitive nerves of his feet.

In addition to forcing John and I to keep the floors relatively free of items, this also creates a problem with shoes. Vincent is sensitive to the type of shoes he’s willing to wear, and it’s many times a fight to get him to keep them on, even when we’re outside. He’s not throwing a temper tantrum because he wants to wear his SpongeBob boots vs. his Spider-man sneakers… he’s having a meltdown because his SpongeBob boots give him relief from his tactile craving while his Spider-man sneakers compound the frustration and add to his anxiety.

7. His movements can be fast and forceful.

Because Vincent is mostly under-responsive to his sense of touch, he rarely cries when he falls or is accidentally run into by an older kid at the park. He doesn’t feel things as strongly as other children. As a result, he has no baseline with which to understand his own movements. The only way he feels his arm traveling through space to throw a ball is if he exerts extra force. That extra movement reassures his brain his muscles are doing what they’re supposed to be doing. This extra movement can come off as fast and forceful. He isn’t doing this to be aggressive or mean. He simply cannot adjust his momentum because he cannot feel himself moving as you and I can. 

Again, please be patient. He is doing so much better with this, but it is a difficult skill to learn when your nerves rebel against you.

8. He is so incredibly smart!

Just because he’s not comfortable in a mainstream classroom doesn’t mean he’s not able to learn. It doesn’t mean he’s stupid. My son is fearsomely intelligent.

His memory is better than mine, his math skills never cease to amaze me and his appetite for his new passion, spelling, makes my heart swell with pride. The creativity and problem-solving skills he’s developed while playing adventure games with his daddy have only proven to me his capacity for intelligence hasn’t even begun to be appreciated. Standardized testing cannot verify his penchant for architecture. Circle time cannot concede to his superior grasp of cause and effect. No Child Study Team will ever capture the wisdom he shows in his thoughtful, gentle care of those he instinctively understands need his affection.  

Again, my son is fearsomely, awesomely intelligent.

9. Oh, how he loves to laugh!

Itself a very stimulating experience, my son loves the sensations he gets from laughing. His belly rolls, his chest heaves, his ears delight in the noise of giggles. His whole face feels the movement of his smile as his eyes crinkle in anticipation of the high-pitched squeals he cranks out.

What joyful music.  

My son loves laughter. He loves being “tricked” and surprised. He loves being the cause of laughter around him. He’ll clown about or say silly things with the sole goal being laughter… glorious laughter.

vincent and his sister

10. Oh, how he loves!

There is not a malicious bone in my son’s body. He happily pets our cats generously saying, “Look, Mommy. Zoey loves me! I love Zoey, too.” He’ll parade around with his stuffed dog, Chase, and tell everyone what a good dog he is and how much he loves Chase because Chase is a police dog. He’ll throw his arms around your neck and tell you how happy he is to see you because he loves you “so so much.” He’ll make you feel like a million bucks because, to him, everyone is his “best friend in the whole, whole world.”

In a word, my son is love… pure, unblemished love.  

Please remember that the next time his sensory challenges leave you frustrated or confused. Above all, simply remember he is capable of giving and receiving love. Next time a sensory-craver like Vincent has a meltdown, respond with love. Push aside your own frustration and confusion because it pales in comparison to the anxiety he feels on a routine basis.

Respond with love, too, to the parents of these children. Do not discount us as bad parents or folks to be pitied for having a “problem child.” Far from it. We love our children and are proud of them. We are joyed at being given the opportunity to unwrap their potential and can’t wait to see how they change the world.

Follow this journey on My Broken Fiat.

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Originally published: June 8, 2016
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