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.


Saturday 4th July

Ok so I have never done anything like this before but am hoping that this may help me to analyse better, the situation I am currently in with both my daughter and son. At the moment I am going to focus mainly on my daughter who has Aspergers Syndrome.

I only told her that she has the diagnosis a week ago and so this concept is really new and novel to her at the moment. She is a very intelligent 9 year old with a fantastic level of academic understanding. She is a very competent reader and writer and loves it when she is involved in a task or work which requires her to write things out or record things.

Because of this, and the limited availability of texts out there designed for girls who has Aspergers, I have decided to write a book specifically for her, about her, which will hopefully not only help her to understand the condition, but also provide me with a greater knowledge and understanding so as to give her the help and support she needs.

I went searching for literature to help Bethany to understand primarily that what she has does not mean that she cannot continue to lead a so called 'normal' life. The problem I seem to be having is that the majority of literature out there is aimed at boys with Aspergers or girls who have a more extreme case of Aspergers, coming very close to pure autistic tendencies. Bethany does not have a text book case of an ASD (Autistic Spectrum Disorder) and I am worried that if she is categorised as having a more defined aspect of it, this may either scare her or encourage her to behave more like these examples.

Telling her that she had the condition was a lot easier than I had ever anticipated. We got the diagnosis in 2007 when Bethany was just about to turn 7. It has taken 2 years to tell her that she had the condition because I didn't want her to feel excluded from her peers or from everyone else. There was also probably a bit of denial attached to it. If I told her that she had it then it meant it was more real than I was ready to accept.

The thing was, that the older she got the more aware she was that she was different to others. Bullying was a really prominent part of her life, at school especially. She would come home in tears, totally distraught that people were being nasty to her, yet she would have no idea why. It became so awful that we had no idea what to do next to help her. The actual physical support network seemed unreachable and apart from books or leaflets, it felt as though we had just been given this ticking bomb with no training as to how to diffuse it.

Over the following year we had many personal issues at home, including the breakdown of my marriage, a move to another home, my suffering depression, a suicide attempt and the death of my grandmother. Not to mention the revelation from my daughter that she felt her father treated her differently to that of her brother.

All this obviously affected both children and all of us. From this point I had returned back to University to continue my teacher training and whilst on teaching practice, her behaviour changed dramatically. Bethany had always been an extremely well behaved, well mannered little girl. She always did as she was asked because she loved to please and be told that she was a good girl. It was the gratification that she needed and she had always realised from a young age that praise was by far better than punnishment.

Bethany started to lash out, trashing her bedroom and anything in her path. She would go into wild rages where her sole intention was to hurt others, primarily me. She would scratch, bite, kick, throw objects at me and shout a torrent of abuse at me. Basically anything which she felt would hurt me bother emotionally and physically.

This resulted in me making the decision to postpone studies at University again at the end of that academic year. I believe that her behaviour started to escalate at this point because of the amount of time my studies were taking me away from her. She needed me and possibly was feeling abandoned.

The studying stopped and so it seemed did the attacks or 'episodes' as I refer to them as. However after a few weeks this behaviour returned and I could no longer put it down to my absence through study. It was at this point that I began to realise that her behaviours were displaying the pure characteristics of ADHD (Attention Deficit Hyperactivity Disorder).

Late in 2008 we went to the doctors to enquire about the possibility that she had ADHD. He agreed immediately that with the description we had given concerning her behaviour, that she did have it. He contacted the same paediatrician whom diagnosed Bethany with the ASD which led to a brief referral to an organisation named CAMHS (Child and Adolescent Mental Health Services) This team would supposedly assess Bethany for ADHD and maybe provide us with strategies in dealing with it.

This however didn't happen, as the response from them came at the same time as the Early Bird Course began. The Earlybird Course is designed to help parents of children with an ASD. It is organised and funded through the NAS (National Autistic Society) and free to attend. We were told that until we had completed the course, they would not be able to help us. Something that neither us or the course leaders could understand.

Earlybird ended around four weeks ago and we have not heard anything from anyone willing to help with the diagnosis of the ADHD. It is commonly known that with an ASD can come ADHD however because Bethany does not display her ADHD characteristics at school but at home, we do not have outside 'agencies' who can verify our claims. How ridiculous is it now that I am hoping that Bethany will display this behaviour in school, so that it can be acknowledged, assessed and supported!!!

And here we are, full circle back to the current decision taken by me regarding a book designed for Bethany, by Bethany, about Bethany. Hopefully this way she can learn, just as I will, more about what she is going through and find some solace in the fact that she is special, unique and amazing, and all that applies even before you take into account the ASD or ADHD.

Wish me luck because I have no idea how this may turn out, whether we will succeed in our tasks, or completely fall by the waste-side. What I do know is that I am going to try. I will learn through the process regardless of the end result and Bethany will know that she is being supported throughout.