I have not written for ages, there has been so much going on that I just have not had the time or the energy to write. Blogging had been all but forgotten until this evening. Someone I hadn't seen for a while said something to me. It was only a small comment in a very brief conversation but it was something that made me realise why I was blogging in the first place and that I had to keep fighting. I figure you have two choices, you can either fight for your children on the basis that nobody else is going to, or you can just give up. I don't do giving up very well.
So here goes with a (not so) quick catch up and hopefully, more regular updates.
Life has been extremely busy here, with work, Duck and Son, appointments all over the place with various 'professionals' and the never ending job of being a mum.
Social services whom a 'friend' so kindly called came and went. The issues raised were all justified, funnily enough. Lots of the issues raised were things I had mentioned in blogs. I guess its nice to know people are actually reading my waffle. :-) Its also nice to know people are concerned enough to act if they think there is a child abuse issue. But its now time to move on.
So on to the appointments.... Duck has now been assessed by CAMHS, she was also visited twice at school by their psychologist. CAMHS use the old and very outdated ADOS test for autism. I have never expected this to pick up on Ducks traits. The ADOS was designed 25 years ago to pick up autism in classic cases in boys. Duck is neither classic nor a boy. The ADOS has been updated a few times, so it does, on occasion pick up on some more subtle traits but I have never expected it to pick up on Ducks behaviours. I don't have the results yet. I have no idea how long CAMHS will take.
We had Duck assessed privately too. She took 3 different tests with our private psychologist. She was tested under the WISC which is an intelligence test, under GADS which is an aspergers test, and also the Beck Youth Inventories test which assesses for depression, anger, anxiety, disruptive behaviour and self concept.
Duck did well in the intelligence test (we always knew she was clever) She scored an IQ of 96 which is average. She showed some difficulties with her perceptual reasoning. She showed difficulties with verbal comprehension. Low verbal comprehension results have been associated with problems in language and social reasoning. Despite these scores, her overall score on this test was not typical of Autistic spectrum or Aspergers, however, there were certain characters which could indicate such a disorder, such as those above and her concrete response, limited social reasoning and heightened visual attention.
The GADS test obtained a score of 97, which means a high probability of Aspergers and on the Beck, she scored moderately elevated anxiety, lower than average self concept and mildly elevated anger.
None of the results surprised me.
Ducks final outcome of all the tests taken into account the characters from the WISC which could indicate an autistic spectrum disorder, the GADS test which did indicate high probability of Aspergers, the anxiety, self concept and anger scores along with her preoccupation with specific rituals and routines (which are all often associated with Aspergers), the current situation is that Duck has indeed got Aspergers syndrome. Which I can see. I see all of the traits described in Duck and I see why she doesn't fit typical ASD and I see why the diagnosis has reached the conclusion which it has.
I find it interesting to read the report and work out how it all fits together. Child psychology is something which I have had a lot of interest in over the years, indeed, I am currently undertaking my Level 4 Diploma in it, which includes lots of detail about the WISC so it was interesting to see it in action. That's another thing that has kept me busy. I studied Child Psychology some years ago. I decided that due to the lack of understanding of Duck and her behaviours within the big wide world, that I would pick up the lose ends at re-start the studying. Not that I actually have time, mind you. However, I have managed, reasonably quickly to get through the coursework, I am now just waiting to sit my final exam, which is online and in need of some very in depth work. I am hoping to complete it within the next couple of weeks.
One of the things I have covered in the course is the management of aggressive behaviour. Bare in mind the course is based on Neuro Typical (normal) children it goes in to great detail about how if you ignore or punish bad behaviour and reward good behaviour, the bad behaviour will 'extinguish' and the good behaviour will grow. Yes, this does, indeed work on a NT child. I have worked with children for 7 years, and had my own for 11. It works, it really does. But, when you are dealing with a child who has 'concrete response' and 'limited social reasoning' coupled with 'preoccupation of specific rituals and routines' and 'high anxiety and anger', your normal behaviour management just doesn't work. Its not through lack of trying, its not through poor parenting, its through a child who is trying hard, really hard, but just isn't coping with the demands and stress of every day life.
We have also been on a couple of parenting courses, one was how to manage extreme behaviour and the second was de-escalation. Both of which offered a few ideas to add to our current bundle, but most of which we already do. We are still booked onto the Webster Stratton (the incredible years) when they run an evening one, however, I have already been told again, we do most things already and we may only pick up one or two techniques. Again, we will add these to our collection. We constantly need to change our reward system. Each one has a short life expectancy, then we move onto another. We keep them all ready and move things around to offer variety and to spark interest. Currently, we are on 'A good morning or evening (behaviour wise) will earn you a scoop of bath salts in your jar, when the jar is full, you get £1 and you can use the salts for a nice relaxing bath'. This one has lasted well, just over 3 weeks so far which is amazing. Duck isn't behaviour perfect, however, she is keen to get the money as we stopped all other pocket money. She now has to earn it with good behaviour and if it takes a month to earn £1 then so be it. To be fair to Duck, she has already earnt £2 in total and this evening she has been very motivated to be good and hit her third £1. Son has one too, we always run the same system for them so we are being fair to them both.
Sadly Ducks anxiety issues have now spread to school. She is separating really badly from me most mornings. There are some where she goes really nicely but the majority show just how much she is struggling. She has started being aggressive to her teachers, just for an initial time after I leave, for about 10 minutes. She is being kept away from the other children until she has calmed, but I hate the fact that she is struggling so much that she feels the only way to communicate this is by violent behaviour. Again, referring to child psychology, a child will communicate however they can to be heard. Duck struggles to talk about her feelings, (refer to the low verbal comprehension score I mentioned before) so she is expressing herself the only way she can. The School are working with us at the moment, we are trying several different approaches to improving the situation such as dropping her at different times, offering her different routes to go into school through and setting up some new behaviour management charts. Behaviour support are still visiting weekly to support her too, she enjoys his visits and he is helping with friendship issues as well as self confidence and he chats to her about things that have gone well or not so well over the week, and how Duck could look at things differently. I am desperately hoping all this effort will work. Things cant go on as they are. Its not fair to Duck to be this anxious and its not fair to the teachers. I don't think they get paid enough. :-/
Duck has loved the warmer weather we have had recently. She has spent a lot more time outdoors, in the garden playing or on her bike. She has even taken the dogs for a walk (with son) on one or two occasions. Its lovely to see them both enjoying the fresh air and playing together instead of having cabin fever and driving each other mad. Duck has been eating well too. She finally began to eat solid foods again and, although her diet is somewhat restricted, its nice that I can cook and she will eat. She has progressed onto food like chicken pie/slices, pizza, tuna or chocolate spread sandwiches, chicken nuggets and such like. We are so impressed, that we have promised her a trip to Mac Donalds tomorrow lunch time for her to choose a meal. We have always said we will take her there as soon as she feels up for it. This time round of food refusal has gone on for a long time, she deserves the treat. Her weight has done well though, she has managed to put on a few pounds, so despite her reluctance to eat for 10 weeks, we have done really well. I am seeing a child nutritionist in a couple of weeks, at the rate Duck is going, by the time we actually get our appointment, Duck will be eating full roast dinners and the nutritionist will wonder why we were referred. That's just typical. Still, on the plus side, I can discuss with her what Duck was eating when she was refusing solids so I can be better prepared for managing it if it happens again.
That's the update. As I said, lots going on and the fight for meeting Ducks needs will continue. The whole process in getting Duck the support she needs is long and slow. But we will win. It will take time. We just have to be patient. We wont give up. Duck cant fight this alone. In order for Duck to achieve the best she can out of life, she needs the right support. And she needs it now. So on with the fight.
Happy weekend everyone. :-)