Progress On All Fronts!

Well it’s been ages since my last blog post.  The truth is that I haven’t had much to report, everything has simply been rolling on in a rather uneventful way.  Mollie continues to thrive and she now has a much more varied and positive existence.  She is left to do her own thing but with very careful guidance from us it is all working out very positively.

She has even started to do lots of writing, completely under her own steam, in the form of plays, songs and letters to her friends. I have also, in some of her more recent writing, noticed that with no formal teaching at all she has decided to start doing joined up writing.  Her literacy skills have vastly improved and have gone from strength to strength by simply learning naturally.  Of course, she is extremely dyslexic and so her literacy skills will never be perfect but she now has enough capability and knowledge, in this area, to be able to navigate the written word and to be able to respond with her own written points.

Here is a recent example of Mollie’s writing which for an individual with severe dyslexia, and no formal education to speak of from the age of six, is outstanding progress.

A really important and positive development is that Mollie has decided that she wants to sleep in her own bed!! I thought that the day would never arrive but unfortunately this does mean that I now have to put up with hubbie’s constant snoring and fidgeting instead!  She decided, out of the blue, that she would like a fish tank in her room.  Once the water had settled Nemo and Flipper promptly arrived and, as long as they continue to thrive in her tank, they should soon be followed by two more fish already named, by Mollie, as Champion and Captain. The desire to watch her fish swim about appeared to prompt her to have a desire to be in her own room at night. 

Initially either Lee or myself slept on a mattress on the floor because she was uneasy about the thought of being on her own.  After a very short period she declared that she was quite alright to be by herself and so she now goes to bed at about 11.00pm and stays in her own room all night.  Of course she may often stay awake all night but she is happy, causes us no trouble and this is progression.  None of this was instigated by us it simply came naturally from her, in her own time and of her own volition.

Here are Mollie’s notes on how to look after her fish.

For my reference she drew me a picture so that I could recognise the fish and call them by their correct names.

Something that I was dreading with a passion was Mollie starting her periods but I am pleased to announce that it has happened and passed by rather uneventfully.  She completely took it in her stride and with added assistance from me she has coped admirably.  I think that this is a big worry for many parent of girls with PDA but hopefully your girls will take you by surprise just like Mollie has done with me.  She very proudly announced the news to her little group of friends and so those youngsters that didn’t know about periods do now.  Thankfully I had already warned the mum in question of what her daughters may be about to learn.  As ever she was totally relaxed and cool about things.

Mollie continues to play outside with peers and we now have a little group of about five girls who all knock on to play with her.  It is lovely to see her out playing on her bike and her scooter while laughing with other children. However it isn’t perfect because we do have to deal with the stress that this elicits and absorb her anxiety of coping with the outside world when she is in the home.  Her resistance to do anything at all in the home and her abruptness towards me has increased but it is much, much better than it used to be.  Infact the words please and thank you have, without prompting or requesting, become a very normal and natural part of Mollie’s vocabulary.  If she is coping with playing outside and with keeping a lot of the natural her ‘in’ then it is only reasonable to accept that some of this supressed natural Mollie will need to be unleashed inside the home.

While this approach of ‘unschooling’ may not be suitable for all children with PDA I think that it would be hard for anyone to argue with the results that we are achieving by following this very philosophy.  I am not against education and my son still attends mainstream school and does well there.  It is simply a question of following the path that is most suited to the individual involved.  One size does not fit all and I aren’t of the opinion that ‘radical unschooling’ is the best option for every child or every family.  However I do think that it is an option that should be given more credence and not so readily dismissed because it simply doesn’t fit in with normal conventions or trains of thought.  The proof of the pudding is in the eating and it is the final result that this philosophy should be judged on.

Lots of parents in my street have been supplied with Mollie’s personally tailored PDA aware pack in the hope that this will allow her and us as much tolerance and understanding from others as possible.  We only have the odd one or two neighbours that don’t appear to be understanding or tolerant to Mollie’s unique outward presentation and this can cause issues.  However the majority are onside and are extremely supportive and understanding.  For the odd one or two who aren’t then so be it, I have tried but, as they say, it’s no use knocking if there is nobody in.  I am currently cultivating a rhino skin in my airing cupboard so that these few individuals can cease to affect me in the future.

I have sent my letter off to Stoke On Trent’s ‘Clinical Commissioning Group’ requesting that my local authority officially recognise, diagnose and support individuals with PDA.  I’m not expecting any miracles any time soon but hopefully it will at least get those who are in professional positions, in my area, to be forced to at least discuss PDA.  Simultaneously, the timing could not have been better, a fellow parent in my area recently contacted me with concerns that her child may have PDA.   We have collaborated and submitted a complete pack of information re her child prior to her appointment at CAMHS.  The case and my proposal for a referral to the ENC for assessment is water tight with every possible avenue explored and answered.  Anything that CAMHS may potentially throw back at me re this case I am fully confident that I can quickly, efficiently and with knowledge bounce back, it will be interesting to see what they come back to me with.

I have also been doing loads upon loads of work on my book which has been accepted for publication by Jessica Kingsley Publishers who are quite possibly the main autism publishing house.  Fingers crossed my publishers have pencilled in a very tentative publishing date for January 2015.  Phil Christie himself, the world’s leading expert on PDA, has agreed in principal to write the forward for my book which I am absolutely thrilled about.  Obviously he has to read and agree with the contents of my book before he can fully commit but I do hope that I have done the PDA cause proud and that he feels that he can put his name to my book.  I have learned so much about writing a book while simultaneously fearing that I may, at some point, blow my own brains out.  Hopefully I can take everything forward that I have learned to my next book.  My publishers have given me excellent advice and comments and my book is now looking like a much more polished product as a result of their input. However I am sick of reading the damn thing, it’s my story, I know what’s coming next, there are no surprises on the next page and I’ve read it about fifteen times to date!

Some really exciting news is that Channel four are doing a documentary on childhood behavioural issues and that they will be featuring a slot on PDA.  They have already done some filming at the Elizabeth Newson Centre (ENC) and interviewed some of the staff involved in the diagnostic process and Ruth Fidler who is the deputy head at Sutherland House School and speaks at the PDA conferences about the correct education provision for children with PDA.  This is an amazing step in the right direction for the PDA movement, at last, some air time on mainstream TV!

The PDA Army marches on for acceptance and understanding, we will get there eventually!