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A Mother's Explanation of Sensory Processing Disorder (SPD)

What is Sensory Processing Disorder (SPD)?

Sensory processing is how our nervous system transforms external sensory inputs (such as touch, smell, sound, etc.) into appropriate motor and behavioral responses. Madi has Sensory Processing Disorder (SPD), a condition where the sensory inputs don't get received and organized into appropriate responses. While many people (especially kids) have sensory sensitivities - a strong sense of smell, sensitivity to light, etc. - SPD is an extreme case. It can impact daily life.

SPD is like a traffic jam in the brain caused by bad traffic management. Sensory inputs are coming in, but they aren't organized appropriately so congestion occurs. This, in turn, causes unusual, adverse reactions to typical inputs. Like, throwing herself on the ground screaming and crying when fireworks go off.

I'm not a medical expert. But I have had several years of observing and experiencing SPD with my own child. Every child with SPD exhibits different symptoms. It's not a straightforward diagnosis, nor is it a straightforward treatment / therapy plan. We are still learning and adjusting as we go, trying our best to help Madi be comfortable in her own surroundings. And, as she gets older she is developing her own coping mechanisms.

What does SPD look like for Madi?

Madi has struggled with the same sensory needs for several years, although through Occupational Therapy (OT) and maturity (developing her own sensory regulating mechanisms), we have seen improvements.

  • Auditory Processing -

  • She has an unusual aversion to loud noises, and extreme responses to unexpected noises. When she was younger, this included things like the vacuum cleaner, a loud toilet flush, hand dryers in bathrooms, fireworks, sirens, etc. Today, she is much more comfortable with sounds that she is used to, like the vacuum cleaner, but still has adverse reactions to loud, unexpected noises like fireworks.

  • We also suspect that Madi has a hard time filtering background from foreground noise -- she is bombarded with all noises at once making it difficult to pick out important information. We have to repeat ourselves often.

  • She can become overwhelmed in crowded or loud spaces, especially unfamiliar places. She has had extreme meltdowns after being in a sensory-rich environment, like crowded and loud spaces.

  • Oral Processing - When she was 3 and diagnosed with SPD, almost everything was still going into her mouth. Now, at almost 6, her fingers and necklaces still frequently find their way into her mouth. She often wears a chewable necklace as a safe alternative to her chewing. Gum or hard candy is an option.

  • Vestibular (movement) and Tactile (sense of touch) - The vestibular and tactile systems are the most confusing for me, as it appears that Madi goes back and forth between sensory seeking and avoiding. I also think that that the overlap between SPD and ADHD is found here.

  • A few examples of what Madi struggles with include: panic when spinning , easily becoming carsick, always fidgeting, tendency to touch or hug everything, tantrums with hair or teeth brushing.

  • Her difficulty with attention, following instructions and emotional dysregulation may also be rooted here. Her SPD, in combination with ADHD, makes it really hard for her to stay focused and to complete daily tasks. She is easily distracted.

With all that said, she is just a kid. And all kids have that thing or things that set them off. So we try not to blame everything on SPD. Because honestly, we just don't know what is or isn't caused by a sensory issue. She is a strong-willed and defiant child. She can be manipulative to get her way. So we have to walk a fine line and try to balance between behaviors that we believe are IN her control, and those that may not be. Finding effective discipline has been especially hard for us. There are times when we mess up, when we lose our temper, when we are inconsistent. We are learning as we go. And we do our best.

What causes SPD?

The short answer is that no one really knows. According to the SPD Foundation, SPD may be inherited and coded into the child's genetic material. Prenatal and birth complications have also been implicated, and environmental factors may be involved.

It's likely a combination of many things, and nothing that can be pinpointed exactly. From my experience, I do believe it is more a factor of Madi's genetic makeup than anything else. I have never thought this is something that we caused or could have avoided. It's just part of who she is.

What is the treatment for SPD?

Madi was diagnosed when she was just 3 years old and in preschool. Her teachers were the first to suggest Madi possibly had sensory issues. At home, we just thought we had a really difficult child. She was our first kid so we didn't have a comparison, and we didn't really know what behaviors were expected or not. Through the process of getting a diagnosis, she was observed in the classroom and it was noted that she seemed uncomfortable in her own body and in her surroundings. This made me sad and we immediately sprung to action. We had a full evaluation with an Occupational Therapist and started therapy soon after.

Madi had about 9 months of Occupational Therapy when she was first diagnosed. Her treatment plan was focused on regulating her nervous system so that she could better identify and respond to sensory stimuli. She also completed a listening therapy program, aimed at improving the neurophysiological foundation for integrating sensory input by using specific sound frequencies and patterns to stimulate the brain.

In addition to her OT treatment, there are many things at home and school that we do (or have tried) to help Madi with some of her daily struggles. Chewable necklaces, a weighted lap seat, special chairs, noise-canceling headphones, and light skin massage before bedtime are just a few examples.

With all that said, treatment is helpful BUT it is not a cure. Although we have seen improvements, it is still something that Madi struggles with. I'm not sure it will ever "go away". Like I already said, it's just part of who she is. We can help keep her nervous system in check through a sensory diet (using some of the things described above), but it doesn't take away the SPD. It just keeps it at bay.

There is SO MUCH more to Madi!

I've spent a lot of time explaining SPD and focusing on it in this article -- just to help build awareness. But rest assured, Madi is NOT defined by her diagnosis. Although SPD impacts how she thinks, learns and experiences things, she is SO MUCH MORE! She is a vibrant and spirited almost 6 year old. She is an artist who loves to color, paint, and create, just like her momma!

She loves playing with her friends. She is imaginative, and enjoys playing house, school, store, etc. She is silly and loves to make us laugh. She loves princesses and anything pink or sparkly. And the list goes on. She is just Madi! We do our best to help keep her nervous system in check so her best self can always shine through.

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My almost 6 year old daughter took this picture of me, hence the unappealing camera angle.  But this is how she sees me, so even though it's not the most glamorous picture, it works.  This is me.

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