Emma woke up in the middle of the night crying. Her screams of pain, the result of intense pressure in her ears, were like the sounds of an animal under attack. Last night, having read about the intense sensory issues many people on the spectrum must continually cope with, an intensity we neuro-typicals have difficulty understanding, I felt that I finally understood. I “got it” in a way that I hadn’t until now.
For years Emma has, periodically, complained about her ears. When she does we rush her off to various doctors and specialists, only to be told that there is “nothing wrong.” But those words are being said by neuro-typical doctors and specialists and to a neuro-typical there is, indeed, nothing “wrong.” But Emma is not neuro-typical, what appears fine to us, does not feel fine to Emma. She is particularly sensitive to the changing air pressure. She feels unbearable pain in her ears. We cannot predict when this will happen, though I suspect the pain she experiences is exacerbated when she spends a great deal of time in the pool swimming, as she did these last few weeks while in Colorado. Emma loves swimming. She particularly loves jumping off the diving board and swimming under water. I could be wrong, of course, but my guess is, the pressure is worsened with those activities.
Last night by the time I’d woken up and gone to her, Richard had already calmed her down. When she saw me she came to me and wrapped her arms around me, her cheeks still damp from her tears. She preempted me by saying, “Ah, baby. I know, I know. Your ears are hurting.” Her voice sounded almost exactly like my own. She was using the words I use. She was saying those words with the same tone I say them.
I held her for a few seconds before following her into the bedroom. I urged Richard, bleary and exhausted to go back to bed, while I sat with Emma. “Have to go see nurse Mommy,” Emma said, stroking my arm. “Go aaaaahhhhhh!” Emma made a pretend cry. “Mommy come! Mommy come. I need help! AAAAAHHHHH!” Emma continued in a soft voice, reenacting what had happened just moments before. “Daddy says – you have to blow your nose. Oh, I know, I know it hurts.” Emma nodded her head up and down. “Mommy’s here! It’s nurse Mommy!” Then she lay her head on my lap, pulled her blanket up around her shoulders and began sucking her thumb. As I sat with her in the dim light of her bedroom, her head in my lap, stroking her hair I wondered what must it be like to feel a sudden shock of pain caused by something you cannot see or stop. No matter how much you cry out for help, it isn’t lessened. I tried to imagine, what that must be like. How frightening that must be. How upsetting to be the only one feeling it. How disorienting. As I sat there I became aware of the air pressure. I could feel the pressure in my own ears, not painful, but uncomfortable, building the more I concentrated. And I found myself wondering what would it be like if I felt this all the time? How distracting it must be. What if I felt this, but much more intensely? What if I felt this pressure, but the pain was excruciating? How terrifying, while hoping that someone could remove what was causing the pain.
Only we can’t.
For more on Emma’s journey through a childhood of autism, go to: Emma’s Hope Book
Oh Emma! I am sorry you have to go through that pain sometimes. I hope your ears are feeling better today!! 🙂
It is so painful to watch our children have pain that is not even comprehendable to us and not really be able to do anything but try to comfort, through a loving touch and word. It is great to see , though , that Emma finds comfort in your touch, in your words, in your constant love and never ending nurturing you give her. My emma’s birthday is today. She turns 9. She has been sick since Friday with a cold, causing a stuffy nose which must cause similar pains to her. She wakes up screaming that her nose hurts, to fix it mommy, that her ears hurt, and she blows incessantly to try to relieve it, only causing more pain from a very raw nos and lip. It is heart breaking. I try to understand and imagine what it must be like for her. One time, a pair of pants was kind of uncomfortable to me. I started really thinking about this. I focused on this discomfort, I ruminated on the tightness, I became engrossed in this sensation and at one point wanted to rip off my pants. Of course, as soon as I chose NOT to focus on this, I could easily go on with my day. However, Emma does not have this choice. She cannot simply choose to focus or not. It overwhelms her. My heart goes out to your Emma. I hope tonight is better:) hug Kelly
hugs, Kelly (sorry for the typo)
Hi Becky and Kelly,
It really is awful feeling so impotent, so unable to take away our child’s pain and discomfort. I remember early on when she was very little sitting in our rocking chair with her in my lap. The ABA therapists were all saying I should be working with her every waking hour, but I thought that the one thing I could do that she wouldn’t let anyone else do was hold her while she fell asleep. Now, even though I can’t make the world a comfortable place for her, I can hold her and she seems to be comforted by that, which makes me so grateful.
Holding is therapy… for both of you. She is able to relax her body which can reduce pain and you are able to take action which reduces feelings of impotency. And you are doing it together, which makes the effect all the more potent.
Thank you Charlotte,
Yes, it makes me feel that there is something I can do to comfort her, which for a long time, when she was in pain, she wouldn’t let me do. She only recently began calling me “nurse Mommy” when she hurts. I love that!
In 2004, I suffered brain damages after organophosphate insecticide exposure, sprayed by the govt for the threat of West Nile. It is known to cause brain damages in lab animals. My symptoms were those of ADHD, autism , and Alzheimer’s. I needed a dictionary constantly at hand, as I lost the ability to remember words, spelling, and meanings, and had great difficulty trying to communicate. My ears began hurting in 2008, with sun, wind, pressure, and temp changes causing severe pain. By late summer 2010, I started passing out with eating. My chiropractor’s office began new therapies, esp. auriculoelectrotherapy treatments, which have fixed the problems for the most part. I remain sensitive to loud noises and love silence and the sounds of nature. My brain cells were found to not be firing or communicating properly with other organs/body areas, and I could barley communicate. After several treatments the brain cells began firing and working correctly, I could use big medical words again, stay on subject better, have improved memory, and other nerve damage/symptom reversal, but I need more treatments with a modality not allowed by the FDA, but is used in Germany with great success for further healing, according to the doc. Please look into auriculoelectrotherapy as hopefully a way to help your suffering daughter. You may contact me thru facebook if you have any questions. I also have more info there. Thank God my son showed me the benefits of cannabis for helping fix the nerve damages, too, so you’ll learn about that too!
Hi Brenda, thanks so much for your comment. It certainly sounds as though it has helped you. That’s wonderful. Appreciate the information.
I know that my issues with regards to airways might be a bit different from your daughter’s – but have you been to an ENT? I know that I have a chronic sinusitis, caused by streptococci and golden staph – for which I need to use topical steroid spray, antibiotics as needed and topical nasal decongestant.
To make matters worse, I have allergies as well, further causing the sinuses and Eustachian tubes to clog up – sometimes I need oral decongestants as well, on top of my treatment with Singulair and antihistamines.
It might be worth checking out if there are any allergies, infections (do note that taking a culture of the nasal passages is, well, no fun at all…), or whether your daughter can use for instance nasal spray or even something like an OTC antihistamine with decongestant. Just make sure it’s a non-sedating (not Benadryl, e.g.) version…
Also, sometimes, yawning and/or swallowing motions can relieve as good as or even better than the Valsalva manouvre (“blowing one’s nose with the nose pinched shut”) – but with less pain.
Hope you find some help, sure souns like a tough place to be for both of you! But I am glad she has noticed that there is comfort to be found from others, and the “nurse Mom” reminds me of how I talk to my “ombudsman”/therapist/good friend, who also happens to be a RN – sometimes I start the conversation with “I’m calling you as nurse ‘A’, not just ‘A'” just to make the roles clear when it’s important to be efficient. 😉 I guess your daughter might be learning that one person can be and do many things, no?
I love your description of calling your friend and clarifying your need for efficiency’s sake, Nurse A. I wish we all did that. I have a girlfriend who will call me and say, “I have to talk, do you have a second?” Which means my role is to be quiet and listen to her until she asks for advice/opinion/thoughts/ etc. I find it enormously helpful as it sets the conversation up in a good way. I know what my role is right from the outset and can then have a better chance of giving her what she wants!
I’m sorry to hear about your sinus issues. Ugh!
We do give Em an antihistamine, but I worry about giving it to her day after day, particularly when the pressure is bad for an extended period of time, like everyday for weeks. Also the OTC antihistamine seems only effective some of the time. We have another antihistamine given to us by the eyes, ears, nose, throat doctor, but again, we aren’t suppose to give it to her more than a few times in a row. I will look into the strep connection, though I believe we did check this out a year ago, I can’t remember any longer. Interestingly after writing this post she hasn’t complained of her ears bothering her again. I am becoming more convinced it’s related to swimming under water and jumping off the diving board, her two favorite things to do. I would hate to deny her those things as she loves them so, but it does seem she suffers for days afterwards.
Glad to hear from you!