Hi. Im Louise. I have two children my daughter who is almost 10 and my son Oz is almost 5 years old. In February Oz was diagnosed ASD, I am now awaiting further genetic testing, an early bird plus placement and the school are in the process of statementing him.
I guess I am here to ask questions and gain some advice from fellow sufferers and parents.
I first noticed something was wrong with Oscar when he didn’t really say much or try to talk, he used to get very angry and hurt himself by hitting his head on the floor and skirting boards as hard as he could to make himself cry, he was still doing this at three years old. Nursery reported that he was a loner at nursery and any approach at socialisation from another child usually ended up in someone getting hurt. He cannot concentrate on anything for more than 5 minutes, unless it is the television and then adverts make him go crazy. I can lead him through an activity at some length before his concentration disappears. I cant expect him to sit still for any longer than 5 minutes unless he is on the PC or watching the television and I limit these activities to make him play with his toys, despite some hard work on my part.
He was finally given speech therapy after his 4th birthday when I started to show a lot of concern for his lack of understandable speech from a child that would soon be going into a reception class. He was given group therapy with my help and I learnt a lot about how to talk to Oscar and about how to use PECS to help him. I felt like after these sessions Oscar and I could communicate with each other better, he still takes a lot of time to talk and gets his words muddled up. If he's talking to someone I will sometimes find myself translating for them if they haven’t understood as his language can be disjointed at times "move house to park, get car vrooooom" I know what he means!
I struggle with the school on a weekly basis, he is in mainstream school because up until February I had no idea of what was wrong, I knew he was different but never imagined he would be on the spectrum. I was given so much hope that he would make this astounding development and it never happened. I’ve come back from the point of pulling my hair out, no one understand what was wrong and crying every time I look at my son. I wasn’t eating very well, I was more busy looking after my kids and my home than looking after myself and I got quite ill. The doctor put me on antidepressants and vitamins after I started to have panic attacks and I was worried that these would affect my son especially if he was with me when I had an attack. I’m feeling better and on top form now but I always remember ive been to the bottom and its not pretty. Now my house is a mess but were always happy...you have to learn to give and take where its necessary.
It has taken a long time to get anywhere in the system, up until recently I was being forced back into work even though my son wasn’t in school full time because they couldn’t cope with him. I have since applied for DLA for him and have got it, this means I have the extra time to take care of him as he needs it, he can be demanding around the house and gets himself into all sorts of mischief with me and his sister.
His teachers find him a real struggle, I always get the feeling like they’ve never seen anything like it and struggle to cope with him at times. I don’t think the teachers learnt to pick her arguments with him, which a lot of the time leads to his frustration and he will lash out at his teacher. This is becoming more of a common problem as he is expected to conform more to the class regime and it doesn’t work, he cant conform, he cant sit still for more than five minutes, he doesn’t always want to give stuff back and hes not always ready to finish up. Screaming at the school doesn’t help, I’ve tried to support them where possible and have had my attempts laughed at, like it was a joke.
I’ve also met the worst parents in the world, the one that would prefer her child not to play with mine, the one that will openly tell me that my child belongs in a special school. Needless to say I have observed other children that are the instigators of trouble 100% of the time and I wouldn’t dream of saying anything.
I hope I can make a few friends here and get some advice to take with me to some of these meetings and maybe just sometimes I might come and have a rant if some things really annoyed me...
Thanks for listening :)
Lou xx
