Shabby Miss Jenn

Tuesday, 29 July 2008

There's so much too say and so little time!

Well that's how I feel anyway and I still haven't had a chance to fully finish my blog but it will have to do till I have some much needed time to work on it a little more and finish it. Life is still a little chaotic at the moment although I somehow think that won't change too much in the near future and we just go with the flow of it all as only one can.

Good news...Tim is so much better, his depression is pretty much out of here and he is just dealing with his anxiety which is part and parcel of having a breakdown but we are working on it day by day and he is now able to do a little more then just stay within the walls of our home which is a huge step forward and I am feeling somewhat calmer myself because of it.

More good news...we had out very 1st meeting on Friday with Lance's school to deal with his autism. Attending the meeting was his school coordinator, his case manager, Lance, Tim and I. We talked with his coordinator on what autism is, Lance's own journey with autism, what was needed for Lance and what everyone who dealt with Lance needed to know to best implement the help Lance so desperately needs. What will be implemented is an integration aide, support aids (one in particular will be a laptop to help him with his writing skills because of the difficulties there) and we did try to enforce visual aids because Lance needs them but the school coordinator said because this was a senior school there was no way they would be implemented which I must say as much as I understand the reasoning behind it once again it also hit home that everything in life is orientated towards those of us who are neurotypical and not those of us with special needs and disabilities. Anyway he will undergo another IQ assessment this time with the school psychologist asap and reports will be sent to the school from the autism assessment center and CAMHS here in Bendigo to get this ball rolling as soon as possible. We will be changing his total school curriculum and with much thought and total cooperation with his school we have all decided that this will start as of next year when everyone else starts fresh as it would be too detrimental to Lance and his well being if we decided to do it now and we can prepare him for that over a longer period of time so it's much easier for him to manage the change. I'm sure there will be many steps backwards for Lance so he can move forward with a more positive outlook and approach with all the help he will need.

You know my husband read something from a book last night and I will quote it here.

Point to Ponder
I have heard that some folk have difficulty with the giving of a label. 'We are all different', they say. 'Labels separate and can make "difference" a noted factor that might mean "discrimination". Well. I must say that if the baked beans in my cupboard were not labelled differently to the tins of cat food, then I would not know how to encounter these foods appropriately! I think labels are useful.
(ref - Understanding and Working With the Spectrum of Autism. An Insider's View. Wendy Lawson, pg 64)

Wendy herself was diagnosed with Asperger's Syndrome in adulthood.

Could you imagine going to the supermarket and every item there had no label?! Or even your own pantry or food cupboard?! How would you feel? You would become confused, frustrated, disorientated and possibly angry because you would not be able to make out the difference between the items and therefore you would not know what to buy.

Imagine the frustrations, confusion and anger Tim and I have felt over the years when the early intervention officer that took on Lance's case when he was just 3 yrs of age first mentioned it was possible that he was autistic but 2 years later with 2 years of speech therapy and other things put into place she decides the he was now fine and they would close his file and that was that. He starts school, is a mess and no-one could work out why. He continues on, suffers with depression and plenty of meltdowns, is labeled with ADHD sometime further on, then in yr 7 his teacher mentions to me that he thought Lance was autistic because there were just so many similarities in the autistic kids he worked with prior to working at the high school and he saw them in Lance.

We took that to his case manager back then and she refused to listen and said that there was no way Lance was autistic. Funny how things turn out hey because when Lance's diagnosis was made official a couple of weeks ago and that he indeed was autistic all you can think about was what you had been through all these years and that all these years we had been right. Indeed Lance did have autism and the so called "experts" got it so terribly wrong.

So having no label or indeed the wrong label can cause more harm then you could ever think possible. Imagine being told that your son was normal....there was nothing wrong with him despite the long list of difficulties he presented or how about this one.....we think the parents are too blame for their son and the way he all too familiar story yes? Oh how much Tim and I can relate to this because it has happened to us far too many times and all we could question was how is it possible when our other 3 children were not like Lance. Seems silly how they could never answer that one. Having the right diagnosis or the right "label" allows you to become fully educated and with that knowledge, understanding and power you can then help your child in every aspect of his/her life.

For Tim and I (and the rest of the family) we have started a new journey. We now have a diagnosis and because of that we have researched, read many books, watched DVDs and asked many questions about all things concerning autism and Lance fits into the spectrum perfectly. We have started to understand our son and who he is. We are no experts in autism, but we are experts in our son and our mission (for want of a better word) is to continue on this journey and learn as much as we can about autism and to be our son's advocate in every way we can. We will continue to learn and by thus doing so we hope that we can make some small difference in this neurotypical world of ours for those that are on the Spectrum of Autism which now includes our son Lance.

So what's new well seeing as I have been pretty sick for thepast 3 weeks and have only just come good this past day or so I am desperately trying to catch up with so much including my scrapping forums and sites. Check this awesome collab kit out by Tara and Ann-Marie pretty darn funky I say but then hey I'm also bias. Funky Chickadee is available at Tara Dunstan Designs and Pickleberrypop.
And here is my CT LO for Tara using this fabulicious kit. Gorgeous ha!!!! Well I think so anyway!

Ok well I think that about suns it up for today so until next blogging, stay safe, take care and tell someone how much you love them. Hugs Chris xoxo

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