Saturday 4 July 2009

Intro

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.

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