Saturday, 4 July 2009

Writing a story book

Wow, here we are day one of my attempt to write Bethany her own book. It is going to be all about her. Like a social story in effect. The idea is that she can read this book which is personalised to her own level of understanding and her own personal experiences to help her better understand her new diagnosis.

I seriously thought, probably naively, that this would be relatively simple. Granted I have only ever written one book before and that was a children's fictional story book as part of my teacher training. It didn't have to address a specific topic, especially one so close to my own heart. I just don't seem to be able to organise my thoughts properly. I am that eager to get this done for her that all these ideas keep swimming around my head and each and every one seem as urgent as the next.

I want to get Bethany involved with this, I want her to work on it alongside me but I have realised today as I have sat alone, that there are parts that I would rather her read about in an organised text, not just as an abstract paragraph which doesn't fit in a structured context.

So today I have been writing my all new blog (as you can see from this and the last post) and putting down what I think that she feels and thinks. Of course these are only my theories and I may be completely off the ball. So in order for me to get this right with her I am going to have to write out some questions in which the answers will provide me with the insight I need to confirm or refute them.

Bethany is fully aware that I want to write her this book an her reaction has been positive. She has even taken one of the booklets to her room this evening on Asperger Syndrome that we were given when she was first diagnosed. I have told her that some of the terminology will probably be a bit adult for her but she said that she wanted to try it out, so I let her. I figure that if I am going to tell her about her having it, I then have a responsibility to let her have access to as much official information regarding it as possible.

When we first became a member of the NAS we were sent a pack which included a window sticker that simply says, The National Autistic Society. Up until today it has stayed tucked away in the pack. This afternoon I decided to display it in my front window so that neighbours and people who visit or walk by my house will be aware that I am a supporter of the cause. There is also another reason why I have decided to do this.

There are a lot of ignorant people about who hear a term like Aspergers, refuse to actually educate themselves as to what it is, then begin to gossip and react badly towards a person with the condition. I am kind of hoping that some of these ignorant people who live locally to me, may see this small sticker and think beyond it, seeing the link between that and Bethany.

I asked Bethany how she would feel about me placing the sticker in the window for others to see. I am not fully sure whether she said it would be fine because she didn't understand all the possible implications but she did tell me that she wanted people to know so that they understood. It really touched me when she said that and I knew that telling her was the best thing I could have done. She is acting so maturely about all of this, she keeps telling me that she is glad she knows and feels so much better knowing. She wants to learn more about it to help her and to help her explain it to others. I am so proud of her right now it's unreal.

When Bethany was diagnosed I didn't know how to handle it. I knew already that there were people on my street who recognised Bethany as the different one who screamed a lot but didn't know whether it would be wise to tell them about Bethany's diagnosis as this could spur on even more ignorant nasty gossip about her. I decided against telling the majority, but did tell a handful of parents with whom I spoke to on a regular basis. It was very hard for me to fully explain what Aspergers Syndrome meant but in the end I resorted to just telling them that she found social aspects in life difficult.

ASD is an invisible disability which means that you can't tell that a person has it until you interact with them on some level. In fact in Bethany's case it can be a while before you fully realise that there is something different about her. I have found that when she starts a new school year with new people, it usually takes until christmas before there is any bullying or issues surrounding friendships. In the initial weeks, Bethany's relationships with the other kids are really good and things look promising. That is until the novelty of Bethany's over the top enthusiasm for them and playing loses its appeal. The relationship seems to go from fun and new for the other children because they don't have other children in their class like her, to them feeling annoyed and sometimes quite hostile towards her. All of this is due to them not knowing about the ASD.

Bethany has only known about her condition 8 days and already she has decided that she definitely wants her fellow peers to know about the ASD so as they can understand from the beginning of her new school year in September, that her behaviour relates to the ASD and hopefully this way her relationships with these children will be maintained better than they currently are. So now the plan is for an expert to come into her classroom in September to talk to the whole class and explain at their level about Bethany. She is so positive about this as I am, I really think that it could make a difference.

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