To tell our story in one swoop would bore you all to tears, so I will give a brief over view of how it all panned out for us. And then I will go back and put more flesh on the bones. So, how it all started...
My mum had told me that my brother Steve was a really sweet quite baby, and as he was her third and Ed was mine, just thought that was the way it was. I did find it odd that if I pointed out a plane or a squirrel that he took no notice, but with small children you don't get much thinking space and with two big ones needing ferrying around life has a zip to it.
As Ed got older my friends with babies the same age tried toddler sign language, all the other children were entranced, Ed was just trying to make a break for freedom. At all the groups I went to, other children were making progress and Ed was becoming more of a handful. Now all the other children and really talking and Ed is SILENT, except when he is screaming, I visit my heath visitor concerned. As my sister didn't talk till she was 3 I was told not to worry. His third birthday approaches, I bypass the heath visitor and head straight for my GP, he is a little worried to and tries to set up a speech and language appointment. A few weeks in, a pissed off GP calls and says I need to go to a drop in session, he found this info out with a lot of difficulty, but not as much as I had actually finding a session that wasn't cancelled. Months pass before I even get a look in, by this time we are all concerned. Ed is very difficult at pre-school, and at home.
Now we are under a paediatrician, who asks me what I think is wrong? Months pass. I have looked up autism and things to look out for, but it doest seem to fit him. Months pass. After a couple of visits, I ask her, ' do you think he is autistic?' Can you imagine my surprise when she basically said 'if it looks like it and smells like it then it probably is it' and bash boom, Mrs Oke here's your autistic child, join NAS, apply for disability and over in wycombe theres a random club which caters for disable children. The whole statement program got started and off went my precious child, who I had such hopes for, to special school.
Its genetic, theres nothing you can do about it. Ed turned into a head banging (he would smash his head on my tiled floor) shit smearing, screaming, angry, diarrhoea child, who jumped around at bed time like a mad man till he wore himself out sometimes at midnight. He would tear at his skin screaming, and destroyed everything. He would come in the room and just switch the light on off, on off, run off and leave taps running, he was a fucking nightmare! I couldn't take him out because of his behaviour, those months were so dark. I picked out a place to kill myself and him - I couldn't picture the rest of our lives like this. I managed to pick myself up and reached out to social services. They couldn't do anything for me, I was married, and apparently coping even though I told her I was suicidal and contemplating harming him. Those dark months were bad but they got worse. I vowed that if no one else could help me then I would. I didn't remember growing up hearing anything about autism, if its a growning problem then it isn't genetic. I hit google. God bless google. I don't care if they never pay a penny in tax what they have given out for free is priceless. And I read and read and read. Ed got so bad that I had to start taking him to school, it was too awful to see him in the taxi. So my days were taking him to school and when I got home, researching, going and getting him and just getting through the rest of the day. I read about supplements and children with starving brains, it all made sense. I spent 100's of pound on supplement and put them in place. Small signs of improvement. I had him on vitamins, minerals, GFSE, I tried the GFCF diet, but it made no sense to me (yes I know that's like blasphemy but hold your horses) then he started to stop eating all the foods I hid this stuff in. One by one he shut down, and became skinnier, his hair was like straw it was so brittle, his skin was torn to shreds. I switched to more out there therapies. I tried cease homoeopathy and for a time it helped a bit, but not alot, because he would spit it out. In the end he spat out the drops in his sleep and I was at the end of the gangplank and had no where to go.
I had started lying down with him at night, I could hold him down with my arm and reassure him as he fitfully fell asleep. Sometimes I fell asleep too! my poor family barley had any time with me at all. One night as I lay there and he had calmed down, I said to him 'I love you Edward" He turned over and punched me straight in the eye. I saw a blinding flash. The pain was intense. I couldn't get up or he would be up and bouncing again, so I rolled over from him and wept. My eyes are pricking now remembering it. Now in the background to all of this, my husbands business had failed, and we were 2 steps away from ruin. My help was my mum and sister and my faith. Yes, despite everything I have a strong faith. And in this wretched place, I called out to God. I am a strong believer in the power of love, and at this point love was not the emotion I had for Ed. So I thought I will love him because you are in him lord, but this didn't work because I could still see Ed and I hated him at this point. So the idea came to me, but I know what my guru looks like, so I put the face of my guru over Ed and sent him love and demanded help, lord if you have given me this child to care for, you must help me care for him, what do I do? And the random thought came 'what about that NAET?' I had come across this weird therapy several time and dismissed it as quackery, but when your at the end of the gangplank, you have to jump. And this was my leap of faith, and thank God for NAET because it saved me. This is where we are now. Will flesh it out latter. x