Like many Autistics, Emma has a multitude of sensory issues. I’ve written before about Emma’s amazing ability to tolerate certain types of pain, particularly when it comes to her teeth. The idea that she was suppose to present us with her still bloodied tooth in exchange for money from some unknown and dubious entity called the tooth fairy was a concept Emma found unpersuasive. Go ‘here‘ for more on Emma’s teeth and our attempts to explain the tooth fairy.
Blisters on her feet are another example of Emma’s high pain level. As a toddler I remember taking off her shoes, having spent the day running around and playing in various parks, only to see both of her feet had opened blisters rubbed raw so much so that her shoes were stained with her blood. This was before we had a diagnosis and I can still remember sitting on the carpet in our hallway, her bloodied foot in my hand and thinking, how is this even possible? Why wouldn’t she have cried? That the pain must have been intense and unbearable seemed a given. How she spent the entire day not noticing or worse, noticing, but not saying anything, was something I could not fathom.
Yet it seemed that the opposite was also true. If Emma’s ears hurt from the changing air pressure, she cannot tolerate the pain and will cry out in agony. The one thing I know without any doubt, is that my understanding of pain is very different from hers. What I find mildly irritating can be the source of tremendous pain for Emma and things that would cause me to grumble and grouse to anyone within shouting distance are, for Emma, met with no comment.
This morning at 5:30AM Emma appeared in our bedroom. She leaned over as I opened my eyes and placed something slightly wet and cold in my hand. Then she stood upright and beamed at me, waiting expectantly. “What is it, Em? What did you give me?” I asked managing to pull myself into a sitting position.
Emma said nothing, she just stood there smiling. I turned on the light and saw in my hand a shiny metal capped tooth. “Oh Em! It’s your molar!”
This was the molar that Emma had to be hospitalized, anesthetized and kept for six hours before she finally regained consciousness to have capped as she could not tolerate having the cavity filled in the conventional way. This was the tooth that upon waking, Emma cried and tried to pry the metal cap off with her fingers while screaming, “Take it off! Take it off!” This was the tooth that whenever she smiled, the light would reflect off of it, a glistening reminder of the pain she had had to endure.
“Pulled it out!” Emma confirmed, grinning proudly.
I know I shouldn’t have, but I decided to let her stay with us in our bed, even though it was far too early, even though we’ve been working hard at having her go back into her bedroom until it’s 6:30AM, even though by letting her stay with us, I knew I was undoing weeks of work. But I couldn’t send her away. She was so proud of herself and I knew that tooth, that tooth I felt a particular aversion for as it represented untold pain for Emma, had been barely loose just a day ago. How she managed to wrench it from her mouth is something I am unable to truly understand.
I meant to take a photograph of it, but forgot in the rush to get ready this morning. It sits, next to the other molar she yanked out of her mouth just last week, on my bedside table. These are the only two teeth Emma’s ever given me. New York City is littered with Emma’s baby teeth, carelessly tossed wherever she happened to be when she extracted them from her gums. These two molars are little gifts, just in time for Mother’s Day, that I intend to find a special container for.
To read my latest piece, Emma’s New Shoes, in the Huffington Post, click ‘here‘
And if you haven’t already done so, do vote for Emma’s Hope Book by clicking this ‘link‘ and clicking on the “like” button opposite Emma’s Hope Book.
Emma's Hope Book 
How about a cupcake under her pillow?
— The Tooth Fairy
Or a pancake! Could get messy…
That is amazing! For Emma a loose tooth means utter fixation on it….cannot stop feeling it and worrying about it. That is such a great mother’s day present and very symbolic. Love
Thank you Kelly. Sending you love.
Have been thinking about what you said about Emma’s toddler years and her blistered feet. At the same age Teddy would stand in red ant mounds and his little feet would be covered in ants and their bites yet he was completely unaware of what was happening. I would try to pick him up without scaring him (THAT would make him cry) and go straight home for a dose of Benadryl. This happened so often I think he started swelling at just the site of an ant hill. I know I did!
Oh god, Charlotte! That’s incredible. I had this thought earlier, no idea if it’s crazy or not, I wondered if Emma’s so overloaded sensorially that the pain is lessened because there’s so much other stuff swirling around, she isn’t able to take it all in. Kind of like when you’re nervous, clenching your fists or your jaw so that you focus on that rather than the other sensations. I doubt that’s the whole answer because as with Teddy’s red ants and Emma’s baby teeth, even with a sensory overload, that had to have hurt. I keep coming back to Emma’s initial diagnosis – PDD-NOS. That word – pervasive – as in internally AND externally.
PS. I found a little ceramic container my mother had given me years ago, in which I’ve put Em’s teeth!
Interesting thoughts Ariane. I also have been thinking about the idea as you said about so much other stuff swirling around in your head you feel maybe only a portion of all that is happening in you.
When Teddy was two, not only did I watch him, but I babysat two other children. Their dad was studying for his Ph.D comps and I was so busy just managing 3 kids 5 and under I didn’t feel anything except a sense of responsibility to the commitment I made to my friends. The afternoon he took his tests I started to feel this pain and had 104 fever, I ended up in the hospital that evening, had surgery the next morning to discover my appendix had been ruptured for a week to 10 days. The surgeon told me he didn’t know how I had survived. I had a lump of peritonitis in my abdomen the size of a grapefruit and remained hospitalized for 10 days.
I say all this because I have lived through feeling little or no pain because I was strongly distracted by something else. The brain and how it works is the final frontier and I believe no one to date understands how we are wired. I surely don’t!
P.S. Like the three generational connection for Emma’s tooth container.
Reminds me of my mother, who after my father died had to have five surgeries in the space of three years due to her degenerative disk disease that presumably must have been quite painful when he was still alive but that hadn’t bothered her until after he died. She was his sole caretaker and he spent the last decade of his life in a wheelchair. I think you’re right about the brain being the final frontier.
That’s quite a story about your appendix Charlotte! Wow!
Exactly. I just have been wondering if there is any kind of correlation between these kinds of experiences and how an individual with autism perceives pain. Perhaps the absence of sensing pain is just more ‘all the time’ for them and for those without autism it is just under extraordinary circumstances. Just makes me wonder if in that period of a week or so I experienced something similar to what Teddy experiences – kind of like walking in his shoes for a brief moment. Just trying to bridge the understanding. Okay, I’ll be quiet now! 🙂
I’ve often thought I would like to spend 24 hours in Emma’s body, so that I could really understand what it’s like to hear, see, feel, smell and sense what she does. Because as it is now, it’s all conjecture, but I really would like to know so that I could better help.
I have never seen any of Brett’s teeth that have fallen out! He would bug with them constantly too until they were out! Who knows where they’ve ended up!!!! 🙂
Until these last two teeth, that’s how it’s been with Emma. She would literally throw them away, like a squashed bug! We use to joke about it while walking in a park or playground. “Do you think we’ll find some of Emma’s teeth lying around here?”
after one of Zack’s teeth came out I asked him where it was.
‘in the flower pot’ was his reply
We never did find it, nor did we grow a tooth tree 😉
Zack was the same with blisters on his feet when he was smaller.
I love that Zack was able to be so specific! Also the idea of planting it like a seed is wonderful.