Learning to navigate through the sensory landscape: life with SPD

I’ve recently started blogging for the SPD Blogger Network, a website designed for those writing about raising a child with Sensory Processing Disorder. A couple of my posts should be published soon, and I’m hoping it will be helpful for others who are trying to understand what it’s like to live with and help raise a child with sensory integration issues.

My daughter was diagnosed with SPD at 18 months old, when she began exhibiting exaggerated toe-walking and difficulty walking down stairs. After speaking with her pediatrician, I brought her to a physical therapist, who assessed her motor functioning and neurological responses, and then prescribed some occupational therapy in the office and follow-up at home.

So, what is SPD? The Sensory Processing Disorder Foundation provides the following definition:

Sensory Processing Disorder (SPD, formerly known as “sensory integration dysfunction”) is a condition that exists when sensory signals don’t get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.

Like other disorders, the effects can be mild, moderate or severe. My daughter was diagnosed with mild SPD, and the physical therapist was mainly concerned with how it was expressed in the feet. However, I have noted pretty much since birth that there were other sensory-related things going on with my little one. As an infant, she needed a lot of movement – we spent countless hours rocking, walking and pushing her in strollers to get her to fall asleep. Clothes, hair-brushing, tooth-brushing, wearing shoes, and dealing with external activity (sound, lights and lots of people) have all been met with varying degrees of aversion/over-stimulation.  There are other things, but those are the main issues we have encountered. As she continues to develop, some sensory issues become less problematic (tooth-brushing, hair-brushing and clothing) but others have either remained consistent or have become more pronounced (shoes and dealing with external activity.)

A simple decision, like going to a busy restaurant, or for example, the puppet show at her school that we attended today, can either be fun or a potential disaster. Recently, we went to a local restaurant we patronize regularly. It was a Friday night and was very busy. Initially, I didn’t think anything of it until I realized she had her thumb jammed in her mouth and was rubbing her blanket. At nearly 4, I technically should not be encouraging thumb-sucking or reliance on the “lovey”, but it helps her deal with external stimulus and is a source of comfort. Once we sat down, she became somewhat agitated, got up often and had difficulty focusing on eating her dinner. We got through our meal, but decided not to go there again when it was so busy, even though it’s a familiar place.

At the puppet show today, there was the anxiety she exhibits when she enters a room full of people and noise and can’t make sense of it – even though this is also a familiar environment. I eventually got her to sit on my lap (with the blanket and thumb jammed in mouth again) but unlike the other children, who sat still, quietly and were enthralled with the puppet show, she had trouble maintaining engagement, even though she did like it. Her teacher (who is aware she has SPD) told me recently that she is doing better in class at sitting quietly and not talking/interrupting, but as I looked over at the children, I wondered how well she really fares most days in class. I did not see any other children squirming, putting their hands over their ears (she complained that the music was too loud) or exhibiting any other anxiety with the puppet show. She got through it OK for the most part, but it’s a good reminder for me to be prepared to leave any special event if she simply can’t handle it.

What I describe here can vary from day to day, which can be a real challenge. Some days, she can handle the stimulation better than others, depending on how tired she is, how active she was over the course of the day and even how much she has had to eat (and what she has had to eat.) One thing I realized the more I’ve become aware of her sensory processing issues is how much I have my preferences and aversions. I understand now why I often feel overwhelmed (to the point of near-panic) when there’s too much visual or noise stimulation going on around me, or feel after being around people that I need to be alone to decompress and reset my energy.  And like my daughter, I was a toe-walker as a child. If I’m on a cold or bare floor, I will still slightly lift my heels to avoid full contact with the sensation on my feet. 

Talking about my daughter having SPD still feels a bit uncomfortable. I wasn’t surprised by the diagnosis. At the time, I think I believed (somewhat naively) that in time and with some OT, she would just integrate things and life would go on. Like all parents, I don’t want to feel like there’s something “wrong” with my child. Yes, some things have improved and I imagine as she gets older and understands a bit more about what she’s experiencing, SPD will become easier for her to manage. The hard part is knowing that there is only so much I can do to help her; it’s her neurological system and it’s out of my direct control. I can help influence certain things to make it easier for her (and us) but because things vary daily, there are times when nothing really works. I just have to take a deep breath and move on. (Often collapsing in relief when she finally goes down for a nap or bedtime.)

I’m aware that in public, she can be perceived as being a hyper child and perhaps there is some judgment that we can’t control our child. I now look at the behavior of other children very differently now, and don’t make assumptions. It’s a journey that we have to take with her, and sometimes make adjustments that aren’t always so easy or convenient. However, I do feel like she will eventually have a better grasp of her personal sensory landscape. At least I do understand from my own personal experience, so I can help guide her along the way.

(Photo credit: indiagarcia_photography on Flickr)

One response to “Learning to navigate through the sensory landscape: life with SPD”

  1. WOW Dana, I had no idea!

    This is a wonderful thing that you are doing, not just for other parents with children of SPD but for yourself. I think it take courage to share your own experiences with other parents and offer not only emotional support but real viable real life based situation, and possible resolution.

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