One of the things I struggle with the most with Roo disability is his inability to tell me if he is in pain or not. I have to rely on my intuition, my gut feelings, to learn to read his body language but its not always easy.
Now I am more confident in knowing if there is something bothering Roo but there are still a few times where I've doubted myself. There are many times when I've felt so frustrated in playing the guessing game, going through all the motions, eliminating them one by one to try to get to the bottom of the issue. I've had one too many disagreements with GPs who think I'm overreacting but when they check his chest or ears or whatever I ask them to check they are surprised to find I am right that he has yet another ear infection, or throat infection or something else.
Shortly after Roo turned 2 he started to cry esp at night..we got told it was reflux and he was put on meds for it...after a year I said it wasnt reflux and stopped all meds as nothing was stopping the crying.. .we then got told it was behavioural and that he would eventually outgrow it.
Some nights I would be sitting in the dark in my living room , rocking an inconsolable Roo who had been screaming for 2 hrs solid feeling so helpless as I was convinced he was in pain but no one would listen...it broke my heart seeing him sob so hard, sometimes he clung to me for comfort and other times he pushed me away as he couldn't bear to be touched..those were the worst nights...I then decided to start giving him painkillers on a regular basis and some nights they helped to ease the pain enough to allow him to have some rest...some tests were run but nothing was found much to my frustration.
Gradually over time the screaming became less intense, he would cry quietly, he would just whine, moan and be very restless.
Soon after during a routine eye examination in where they said he was losing his sight due to severe swelling and were amazed that Roo had given us no inkling that he was suffering with severe headaches etc...finally I knew I was right all along..he had been in pain and didn't know how to tell us or show us as he didn't understand. After so long he became accustomed to the pain. After some hospital treatment and medication we soon got it all under control, his sight was saved. The screaming stopped at night.. .he still didn't sleep much but that due to his sleep disorder but no longer did he writher as if in pain nor scream for hours on end.
During a conversation with Roo neuro he mentioned that it was a very painfull condition which made me feel so guilty as my mothering instinct has said that something wasn't right but no one would listen and because he couldn't communicate they didn't think to take it further. I even doubted myself at times, wondering if I was looking into it too much. The Neuro shared my frustration in Roo's inability to communicate his needs.
Now, Roo can talk but a lot of his speech is copied from others, communication is very limited and many can't understand what he says if he is speaking in his own language...very often he talks away to himself or to others and they ask me what he is saying as it makes no sense but I tell them that even I don't know , only Roo knows and it's locked inside him. Often he comes up to me and stares at me and smiles as if he thinks he has told me something via his mind but I then have to try and work out what he wants to say. He sometimes says "juice" or "eat" in sign language but sometimes he doesn't want to drink or eat but he wants into the kitchen to play with the dangerous stuff! He clever in that way! While I marvel at how much progress he has made with regards to his speech I find myself becoming a lot more frustrated as he cannot tell me how he is feeling, can't tell me what he did in school, can't tell me if he wants something and most of all he cannot tell me if he is in pain...i am always playing the guessing game with him, there are days when he goes deathly white, lethargic, won't move, is whiny and so on and I wonder if something is hurting or not. One day I saw something leaking from his ear...a quick visit to the docs showed a severe ear infection and the doc commented that it looked painful as had been there a short time but no one had realised. Another time we ended up in hospital with severe tonsilitis which had been viral to begin with but as no one realised he had a sore throat (he was still eating and drinking a little) it became bacterial and it got worse to the point it affected his heartrate and caused difficulty in breathing so he needed lots of antibiotics. Roo has a high pain threashold so I have to be vigilant in recognising the sutle signs that he may be in pain and try and get treatment before he gets worse...
Maybe one day he will be able to tell me he is in pain but for now he relies on me to "know" and that's hard.