To be honest I think Sara has some PTSD in regards to what it was like to have Sensory Processing Disorder and as a result, I don’t often ask her to talk about it. It was a rare moment last week when she sat and openly described what it felt like, and that glimpse into her world gave me such insight into many of her behaviors and issues. We always respected Sara’s limitations in regards to her sensory needs – but admittedly we could not comprehend WHAT was so difficult, or WHY she couldn’t tolerate certain things. With her permission I am sharing our conversation, so that other parents might better understand their own kids struggles – though I assume each child has unique difficulties and experiences.
This conversation evolved because Sara is giving a speech about her recovery for a class assignment. In the past, whenever I asked her to reflect and share what life was like during that time, she would mostly shut down. She would even get teary-eyed and say “I don’t like to think about it” and not really go any further. In retrospect – I think it was too fresh (we are only 9 months in) but I think she is finally able to talk about it now without feeling “pulled back” into those sensations.
It started with her casually mentioning that she did not like to walk because of how the air felt when it moved past her. I was completely taken aback and asked “What do you mean??” She explained that when she walked it was like the air passed right through her and made her cold into her “core”. This brought up so many questions from me and so many attempts from her to answer me, that we just went in circles for a while, but I will summarize the conversation as best as possible.
She said to picture the body with an inner “core” – she compared it to our bones. The core is the inner part of the body and there is an outer part also (the analogy would be the muscles and skin) and that in her case the outer part was not a solid. She said it was like a sponge and everything just passed through it. Then she got frustrated because she felt that a sponge was a bad analogy. I threw out other suggestions – cotton candy? cotton balls?? and each was met with a frown until I said Fog? Mist?? and she exclaimed “Yeessss!!! Exactly like that! That is exactly what it felt like!”
She explained that she felt incomplete – that she had an exposed inner “core” that was unprotected by this non-substantial “mist” covering and that air passed through it just simply from walking. That it was cold and permeated her entire body. She became teary and emotional when discussing this, almost like she was reliving a traumatic event, so I got a real sense of how truly awful this experience was for her. She said even if she was wearing pants and long sleeves it would seep into her face and hands.
She told me that when most people walk on carpet they feel the carpet on the bottoms of their feet (so does she now) but back then, she felt it spread up into her feet and as far up as her ankles, which was an awful sensation. This might explain why so many sensory kids dislike socks and shoes!
I asked if that was why she did not like to touch people or to be hugged at that time, but she said no it was because THIER skin felt like rough, scratchy paper. Even talking about this made her visibly bristle so I changed the topic.
I wondered if this unprotected “core” was why she liked swimming so much? Perhaps the water provided some level of protection to that exposed core? She said that the water did not go through the mist the same way when swimming, and that it was more so that the water “hugged” her and made her feel substantial again. She also seemed to imply that this feeling was improved when she was in bed at night. Of course this makes sense to most sensory parents who recognize how effective weighted blankets, body hugs and deep pressure can soothe a sensory overloaded child. Being in bed also clearly provided Sara that head to toe (and front to back) sensory input that grounded her. So much of what she said helped me connect the dots between what we witnessed from her back then, and the strategies we used to help her at that time.
She also told me that her hearing sensitivity was because to her, each word has a density, color and shape (except short little words like: a, the, but etc.). She said that if you picture our ear drum like a rounded bowl shape, some words would get in there and bounce around heavy and ache, while some were sharp and pointy and stab at her. She said she still has the association of density, color and weight to words but they no longer hurt her. This phenomenon of associating characteristics such as color to words is called Synesthesia and many SPD kids have it.
I did also ask her if she could share with me what it was about food that she found so off putting – was it the smell, texture or actual taste? But she said that she could no longer really remember.
So there you have it – SPD described by someone who lived through it and survived it. Like I said before – not all kids will have the same experiences as Sara – I know many SPD kids LOVE the sensation of running and loud sounds, but hopefully this glimpse into her experience will better help some parents understand their children’s struggles.
**Edited to add: A lot of people have asked us what we did to improve Sara’s SPD diagnosis. I added our Success Story video for those who are interested: