I shut off from the world and became encased in my own despair at what was happening. I suddenly didn't know how act around S again and got strict reprimanding her for things an NT child would know not to do and right on cue she rebelled and proved I was being silly to doubt my mothers instinct. In the week after the ADOS test I saw the most violent behaviour I have ever seen from her. The slightest knock or trip resulted in S screaming loudly, mouth wide she suddenly seemed to forget how to breathe and in a complete act of fear she would run to me throwing herself face first into my chest . On one occasion she scaled the sofa to get to me and was intercepted by hubby, who in the chaos received a set of teeth into his shoulder., then S threw her head back narrowly missing her little sister and head-butted him. I too got a set of teeth in my skin and many head-butts that week. It was awful to watch her this way and I tried desperately to drag myself out of this state of self pity and get on with helping my daughter, cabin fever wasn't helping! We went to visit my sister and S seemed so much happier to be out of the house. That day the over stimulation of two toddlers and the excitement of seeing her two aunts got S to a point where she was very hyper and needed to be calmed. Why I didn't just take her upstairs at the first signs of over stimulation I will never know, but after being kicked and hit over and over I scooped her up put her in her cousins room and gave her every soft toy in sight. She soon calmed down and even asked to stay there a while longer.
Easter sunday the rain poured and we decided a trip to the country park was no longer an option I dreaded telling S but had pre-warned her that we may not go if it rained. She sat sadly on the sofa totally uninterested I then clocked a leaflet for a steam railway nearby and after showing S the website and lots of youtube videos we were soon on are way for a ride on a steam engine. That grey day turned the holiday around and fun was had by all.
Tuesday I took S to a football course put on by surestart. We were going to go as a family but hubby was not so keen so I decided S would benefit more from it just me and her going. The group was small so it was ideal for S The instructor was really good. He did not push her too much and gave a great amount of praise when she did something. S really struggles with her co-ordination and motor skills and often refuses to try new things for fear of being no good at it. She joined in happily for a good 15-20 mins. After this she had started to feel quite challenged by the activities and was no longer taking the gentle persuasion to carry on trying. I could see the stress building so asked if she would like to get a drink and sit and watch for a while. we sat and watched the other two children and the instructor did a few times ask if S wanted to try but got a firm NO. Towards the end S was becoming a little frustrated with herself and wanted to score a goal. The instructor turned towards her and asked if she would like to have a few shots at the goal and try to get a smiley stamp. After being told she could stand near the goal and that it was just her and the goal (no other children) she was encouraged to have a go. I felt a huge swell of pride for her as she kicked the ball into a net from about a metre away. We had a small wobble when she missed but instructor quickly got her back on track. She got her stamp and I watched her face light up when he put the backs of her hands together, said 'abracadabra' then pulled her and hands apart to revel she now magically had 2 happy stamps!
The rest of the week rattled on and we even managed a food shop as a whole family. It was not totally stress free but S managed pretty well thanks to being slim enough to still sit in the trolley (despite some dirty looks for doing so). Friday morning I left for the weekend and S even came to the platform to see me off she even coped well with the noise from the trains with Mummy cuddles and cupping her hands over her ears...maybe there is hope that one day she can get to this point with hand dryers. The break was nice and it sounds like S had a lovely time with her Daddy but I did miss her an awful lot.
I'm now feeling a little more at ease with what is going on and doing as much research as I can. I am am now certain S has Aspergers (AS) which is harder to diagnose as many with the syndrome can appear so 'normal'. It is also far harder to diagnose in girls as it presents itself so different. Many girls fly under the radar until teen years, well into their adult years and in many cases go completely undiagnosed. Statistics related to diagnosis show the ratio of boy to girls with AS are 10:1 yet researchers have found these to be more likely 4:1 due to under-diagnosis in girls. Dr Tony Attwood even believes the ratio is more like 2:1 (see video linked at the end of blog). Armed with this knowledge we now understand it is time to roll up our sleeves get ready to fight for the diagnosis that will give us extra help for S, will mean we can stop having to analyse our daughter all the time and to give us an explanation the next time S queries why she is different. I'll keep researching and am eagerly awaiting the delivery of 'Aspergirls; Empowering Females with Aspergers Syndrome' hoping it will be as good a read as reviews say.
It is sad to read that so many families get fobbed off by professionals for years but I am determined this is NOT happening not to MY child we will not sit at home and quietly await another appointment where we are talked down to and made to feel like we don't know our own daughter. We have already sent the first, in no doubt a long list of letters, to insist our Paed is changed and we get a referral to CAMHS.
S is back at school this week and seems really quite content. When I picked her up wednesday teacher told me her coat was soaked as she had stood under a dripping drain pipe. When I asked why I got 'I was having an outside shower.' On seeing a sad face in her kind-hands book with the words 'throwing sand' I decided to try explain, yet again, why she shouldn't.. I was met with 'but it is all sparkly'...'yes but it could get in someone's eyes and hurt them. You could try running it through your hands like this.' ...'but it's rubbish that way, it doesn't look like fireworks.' How do you argue with that logic? I just grinned to myself and ended the conversation with 'I know it looks good honey but you really can't do it in case it hurts someone. Look at that flower can you remember it's name?'
Dr Tony Attwood on aspergers in girls.
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