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Showing posts from February, 2017

My verbal child still can't communicate...

Following on from my previous post I wanted to explain that even though my son is now verbal I've come to realise its not what I expected as I thought it would make things easier but it hasn't.... The day I heard my son say "Daddy" his first proper word after his 5th birthday made me cry...I never thought I would ever see the day when he could speak words. He had babbled/ vocalised for years before hand but never uttered a word till that day. As the months went by we found he would learn a word then forget it for a while then needed to relearn it but soon he built up a list of words he could say. Everyone was excited that he had found his voice and we were told that our lives would become so much easier now that he was learning to communicate. Now almost 2yrs have passed and his speech has come on amazingly but we discovered that it's all copied, he repeats what he hears others say around him, ask him a question and he repeats the last word or two back to you ra…

Is he in pain or isn't he?

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…

A possible different route...

One of the hardest part of being a parent is making decisions for your children and not knowing if it's the right one or not.According to hearing tests Faith is at the very end of the severe range, borderline profoundly range for her levels of hearing loss and the hearing aids she has are programmed to her level of hearing loss yet we are not seeing any clear responses to them. I always though that once we got the hearing aids we would see the expressions on her face but we have never seen that, when she first got them she slept through the switch on which was disappointing but they said it was early days... it's now been almost 6 mths since she first got them and despite them being turned up we don't see any of the typical responses, she doesn't turn her head at sounds, she doesn't jump at loud sounds, no sounds wake her from her sleep, she doesn't respond to her name and so on...but she is hearing something as sometimes she pauses and looks confused but it…