I Don’t Know.

R throws his head back miserably and half-shouts, half-cries “Eeeeeeee!”  He throws his whole body backwards, landing hard, kicks his legs violently, angry-cries “eeeeeee,” “mmmmm”.  He flails his body over and over.  I try to hold him and he desperately presses his chin into my shoulder as hard as he can, jaw clenched, while he fusses miserably.  After a moment he kicks and screams and flails until I have to set him down again.  This goes on for nearly two hours, then off and on the rest of the day, interspersed with periods of crying.  Lately, about half of the days each week are bad days like this.

I don’t know what’s wrong.  I don’t know if his pain is physical or mental. I don’t know if this will be temporary or indefinite.  I don’t know if tomorrow will be better.  I don’t know if I should bring him to more doctors to get more opinions.  I don’t know if I should give him space or try to hold him despite his protestations.  I don’t know I don’t know I don’t know.

It has been about 2 months that R has been having these episodes.  At first we attributed it to an ear infection, but when that was treated the bad days continued.  Then we thought it was due to constipation.  But we addressed that and still the meltdowns and bad days continue.  We have analyzed his sleep, his medications, his diet, his stools, checked his ears and throat countless times.  He has dental work coming up. Maybe it’s dental pain.  Maybe he will feel better after.  But maybe not.  I don’t know.

I don’t know and I hate it.


5 thoughts on “I Don’t Know.

  1. Our OT said that they process things differently compared to us
    What has worked for us,I’m not saying he is perfect but he is much better.
    We now know what triggers his meltdowns and we avoid those things

    Hope your son finds peace


    Liked by 1 person

    1. Thank you. We are tracking everything trying to see what is triggering him but haven’t figured it out yet. I hope we are able to figure it out soon and find a way to help him. It breaks my heart to see him having such a hard time. Normally he is such a happy, joyful boy.


      1. Thank you. We are doing that. 🙂 I use a program on the computer to track data. Right now I’m tracking sleep, meds, stooling, feeding, meltdowns, mood, behaviors, and any additional notes that seem relevant. The school is also tracking data. I hope between all of us we will figure it out. Thanks again for reading and for your encouragement. ❤

        Liked by 1 person

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