Claudia - posted on 10/07/2009 ( 5 moms have responded )
Hi, my son is 3 years and 2 months and is non-verbal. He is delayed in all areas, he didnt walk until he was 2 sit up till he was a year and is currently playing with 18 month toys. He is a very happy little boy, even though he does not talk, and does not understand anything that is being asked of him, e.g. he can't follow direction or instruction. If he wants somethng he takes my hand to what it is that he wants. He has no imagination and likes being on his own, he finds lots of children stressful and curls up on the floor. His attention span and concentraion levels are short and he flits from activity to activity, but if its something he's interested in e.g. Cars and anything moving he can sit and play with it for hours. He has flat feet, a stigmatism, and his EEG recently showed epilepsy. The results stated that his brain is in "slow sleep mode" whilst he is awake, with very high peaks every now and again. He also has Lipids which is very uncommon (1 in 10,000) chidren, which is when the enzyme that breaks down chloestral breaks, meaning his blood is full of fatty substances, which is currenty being sorted out and he will be on medication for the rest of his life for this. I was told by the paeditrician it was almost certainly Fragile X syndrome, but this result has come back negative. I am finiding it very difficult to not have a diagnose and am stuck with how to deal with him and his behaviour. He has 1:1 at Pre-school which doesn't seem to be doing that much good, i can't leave the room because he cries, and even the teachers struggle with him. He has been going for 6 weeks. I have no idea what could be wrong, with him, no matter how much i show him things he does not take anything in. The speech therapy lists are so long and he has not even been seen yet, and that also goes for his hearing. I am struggling to restrain him now as he is getting so heavy when he has tantrums i get hit and kicked. I would be grateful for any advice on how to improve his speech, and managing his behaviour and also any ideas on what his learning difficulty could be.