Tuesday, August 26, 2014

How to Figure Out What's Wrong With Your Non-Verbal Child 233***

***This is an advanced class, designated 233 for the number of months said child has been non-verbal. If you have not advanced through How to Figure Out What's Wrong with Your Non-Verbal Child 1- 36, you may not find this class relevant to your life. You can read on for random stimulation but might find the contents upsetting or completely boring. In any case, the above photo is from the other day, during a brief respite from shallow, heaving breathing.

  1. Take note of extreme number of seizures on one particular day, but figure it's the lower ratio CBD oil or the moon.
  2. Wonder if the extreme number of seizures is actually a portent of an earthquake.
  3. Take note of earthquake happening in home state but dismiss as reason given how far away earthquake is from home city.
  4. Ponder why child is breathing shallow and hard, constantly.
  5. Ask oneself: Is she breathing like this because she is having an asthma attack? Place head on chest and try to discern wheezing. Is she breathing like this because she is now more alert and thinks it's fun? Tell her to stop it right now because the breathing thing is driving everyone insane. Is she breathing like this as a sort of seizure? Observe that after getting higher ratio CBD, the seizures actually stop yet the breathing continues. Notice that she's particularly alert and happy and is once again having no seizures. Is the breathing self-stimulating? Decide that there's no way to tell.
  6. Ponder why child is reluctant to drink anything. Force child to drink by dripping liquid into her mouth.
  7. Obsess about hydration and constipation.
  8. Start worrying about having to call The Doctor.
  9. Tell oneself that every time you take her to the doctor, it costs hundreds of dollars, and it's probably a virus. 
  10. Last night, during a coughing fit, observe the child to really be struggling to breathe and coughing up some pale yellowy mucous. Observe that she is very agitated and uncomfortable.
  11. Worry that she might have aspirated something or have pneumonia. Think about the interaction of CBD and Onfi and wonder if it's all going to kill her.
  12. Calm down when she calms down after you apply some Baby Vick's Lavender Vapo-Rub, but call the doctor anyway and make an appointment to take her in the morning.
  13. Take the child in to the doctor and try to answer all the pertinent questions despite not being able to really tell the doctor what, exactly, the child feels. Be reminded that the last time the child was on an antibiotic, she was less than three years old when speech was still a viable hope.
  14. Help hold the child down so that nurse can get a throat culture to check for strep. Nurse, doctor and you talk in calm and determined voices as you hold the child down on the floor and dodge her flailing legs and arms.
  15. Stand up with child, look her in the eyes and firmly tell her to calm down, everything is all right. 
  16. Cry a few tears when she throws her head into the tiny Buddha necklace that digs into your clavicle in just the right spot to cause obliterating momentary pain.
  17. Feel grateful for the physical pain that can mask the emotional pain of the whole freaking situation.
  18. Repeat above steps so that doctor can listen to lungs, heart and get a pulse oximeter reading.
  19. Try to explain to doctor what you think might be the problem, and because doctor is so wonderful and states that since she never sees Sophie because she's always so healthy, she agrees and orders an x-ray of her lungs to check for aspiration and/or pneumonia.
  20. Feel relieved and grateful that the quick strep test is negative but listen with sorrow to the doctor explain that her throat looks pus- y and that we shouldn't rule out strep until the culture is fully grown. 
  21. Feel extra sorrow because this is why she hasn't been drinking. Her throat is sore, and she's unable to tell you.
  22. Drive to x-ray place and curse oneself, silently, for not bringing the wheelchair. Apologize out loud to child who is sitting in back seat, less agitated but still breathing heavily.
  23. Fill out forms in x-ray office with one leg over child because she won't stay still and you can't tell her to do so.
  24. Go into the back of the office, don a lead apron and help the technician to hold the child while another technician operates the machine. 
  25. Keep talking to extremely agitated child who doesn't understand what's going on, other than that she's wearing a heavy lead skirt, is being asked to raise her arms and stand in one place without moving.
  26. Cry a bit inside.
  27. Feel grateful when technician is finished, they get clear x-rays and she helps you to dress Sophie.
  28. Feel tearful when the technician kneels down and puts Sophie's shoe on her foot.
  29. Feel momentarily irritated when technician says God only gives you what you can handle! like you've never heard that statement before and actually might welcome it, but realize just as quickly that she is a goddess of a technician and who cares what bullshit she says so kindly?
  30. Receive the news that the lungs are clear and feel nearly orgasmic with relief.
  31. Walk back to the car and feel nearly tearful with gratitude for the valet dude who helps you to put the child in the car.
  32. Drive home wondering if you'll figure out what the hell is wrong with child, knowing that she probably just has a virus.


  1. So a woman walks into a bar...
    No, really. I think you should go walk into a bar. And order a drink. And then another. Because honey, you deserve it.
    I'm very glad to hear that it's "probably" a virus. But you did the right thing, of course. You always do.

  2. I feel exhausted and all I did was read this. Good god, Elizabeth! I agree with Ms. Moon, and while you're in that bar, flirt with a man who has kind eyes. It will do you a world of good.

  3. Holy shit. Yes on the drinks. Holy shit.

  4. Well, I have been beset with anxiety. I'm better now that I've read this. Which I realize is a weird fucking thing to say, but I snapped right out of it. I'm breathing normally. Not especially important. Out of context. Sending love.

  5. I wish I could hug you but even more, pour you that damn drink!!!

  6. Wow. I was thinking, at least no one who is not your child has called you "mom," but then you got hit with the "God only gives you...."

  7. You know? I had the same response as Denise. I hope whatever it is that it passes soon. And that Sophie is back to happy-seeming and seizure free. And you? The bar. The kind eyes. Yes.

  8. Hope Sophie's feeling better soon.

  9. Oh Elizabeth, I wish I could put my arms around you and let you cry. I am so sorry. I can't imagine how hard this is. The drink, the kind eyes and more. Sending love and healing to you and dear Sophie. Sweet Jo

  10. What on earth...I have typed this comment three times now, and it keeps disappearing.

    I am sorry Sophie is feeling so poorly, and for your difficult appointment. Does Sophie like honey? It could help soothe her throat and help with a cough. I hope she feels better soon!

  11. #16 and #17 made me smile as I can barely bite down from a leg that punched me in the jaw during a mild (and gratefully mild) seizure today. I hope for a quick recovery on this one for you guys.

  12. As always, you stir up memories and emotions that make me wish that I could sit and have that drink with you. I did the math and realized that my Andrew and I are at 273 months and still counting! We are also 2 months out from yet another surgery and an 8 day hospital stay. AND, we are on cloud 9 because we are now complication free and Andrew is comfortable and smiling 99% of the time. However, I just spent every minute of every day for almost the last year feeling and thinking EXACTLY like you are now. Even now I am thinking about how far the fall is from Cloud #9 . . . all it takes is one cough, one self injury episode, one tiny little "something just isn't right."

    But, thanks to you, I am DECIDING to enjoy my moment of respite and to send all my positive thoughts your way. May Sophie feel better soon.

  13. If god only gave us what would could handle, dirty martinis would rain down from the sky.

    I hope Sophie feels much better very soon.

  14. I need a nap and a drink now. I hope Sophie gets over it quickly and you don't have a Buddha shaped bruise on your chest.

  15. Elizabeth - I see your comments often on Christy's site and her link to your blog brought me here. I see my 15-year-old, nonverbal, refractory epileptic stepdaughter in Sophie. We are in TX - so you can imagine the fight for medical marijuana here... but I'm fighting nonetheless. Thank you for this post. I feel you. No one can ever imagine our trip to the dentist...



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