I encouraged Fionn to set up this blog.

I have spent years, since his needs were queried first, “studying” autism

  • theoretically – i read volumes
  • i study Fionn constantly!
  • i have spent years looking at inadequacies in service provision – or maybe inequities…
  • we have tried strategies with Fionn which worked and which didn’t
  • admitting failure is the key to learning…we have to just keep looking!
  • i know how many parents have to PUSH against doors to see childs needs met
  • i KNOW that ASD is for life – but is not always a limiting condition – although i fully respect it is a spectrum
  • if you do not LOOK…(and my instinct was to type PUSH) for your child’s needs to be addressed, then nobody will.
  • i am NOT an expert on AUTISM  – nor do i pretend to be, BUT i am an expert on my child
  • YOU are the experts on your CHILDREN… 
  • Helen x

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so what is the purpose of the Blog?

Fionn gets the first say on this…..he says:

  1. to help other people understand and live with their asperger’s.
  2. To find that Asperger’s is not s disability – it is just a difference.
  3.  It might help parents to recognise asperger’s in their child.
  4. It might help other kids to understand and be aware of the feelings of someone with Asperger’s.
  5. It might help people realise that we are all different.
  6. Sometimes i try to tell teachers what things work for me, and what things don’t – and maybe give them ideas for ways to help.
  7. to tell things that helped me so that other aspies might want to try them – like talling people you have Asperger’s
  8. to understand who i was…and know that it wasn’t always me  who was in charge, it was the asperger’s part of me.
  9. To help me think out things so i can figure out who i want to be.
  10. i really LOVE blogging and it feels really good when you think you might have helped someone feel better

from Fionn:)

now for the parents views…

  1. Fionn has always been involved in discussion and decisions taken about his Asperger’s. He is very self-aware – and can compartmentalise himself into things his asperger’s would do, but things he should do – if his end target is to live an integrated independent life. then that information is what we want to share with you.
  2. Fionn in his early years presented as a text book  lost, confused, misplaced child – who I cried about. I had to accept how difficult it was for Fionn, before we could make any decisions on what  to do to help him as best we knew how.
  3. we have had to battle our way trough the “system” – initially having been diagnosed as unlikely to have asperger’s but becoming more committed as we fought to do our best for him. We still have to keep in touch with all people involved in his care.
  4. An Asperger’s child has so many strange quirks – the loveable bits that make them unique..like the need to pick crisps out of their teeth, if a feeling feels wrong, they pick it out, if a smell is too powerful, they can’t enter a room, standing at a football match screaming as the cheers start….We need to quiz and be detectives..WHY? WHAT? we need to figure out these things in our child…initially that is or was for us, like pulling teeth – as Fionn had no more clue than we did, but now, we are at a stage where we can often have Fionn come wxplaining something to us. There is NO TEXTBOOK for this
  5. We have had some inspiring help from professionals, only too keen to support, and we have had some unhelpful and in fact dismissive professionals – we have been told so many versions of phrases i am sure you will recognise:
      1. “Fionn has something special to offer”. 
      2. “I don’t see much wrong with him”
      3. “sure all the class are in the same boat”
      4. ” there are worse than him!”
      5. “he may be a child who can never learn tables”-at aged 5
      6. “Fionn is a fantastic example of what Aspergers can be”
      7. you’d be afraid he might let you down”….
  6. We have to say in favour of your child, that you CAN NOT expect the “system” – either health or education to make your child their central aim…but YOU CAN!
      1. You are the expert on this child 
      2. you watch him 24/7
      3. what makes him stressed?
      4. what fascinates him?
      5. how can you HELP him do spellings?
      6. maths? puzzles? jigsaws?
      7. what are his organisational skills like?
      8. how does he relate to other children of same age?
      9. how HAPPY is he? is he Worried? Is he angry/frustrated?
      10. what helps when he is wound up? to melt-down point?
  7. At the start of each school year it is VERY helpful for the teacher to know information which is specific to your child…in bullet points (they don’t need to read a book!)
      1. his special interests – they may add doctor who characters for him
      2. his sensory problems
      3. his physical signs of stress – twitching mouth, raised shoulder, biting clothes..
      4. his DE-stress things – reading, drawing, quiet room, music, work off steam
      5. his learning problems – :
        1. can he fill a blank page?
        2. is it easier if he has paragraph headings?
        3. can he learn tables? one-to-one?
        4. is he a visual learner…does using props help?
        5. is a larger sheet with less information on it easier for him to work from, than a cluttered squashed page? 
      6. his social problems- does he make friends? has he a particularly close friend? does he need help mixing? can he take tuens?
      7. emotionally- is he age appropriate? does he want hugs everyehrer? will he be laughed at for any of his habits?
  8. The aim of the blog is NOT to promote Fionn as the way to raise an Asperger’s child. There is no book deal in sight. We have just decided to share what experiences we have gone through – prediagnosis, during diagnosis, post diagnosis.
  9. We have led the care with Fionn – and continue to do this. Fionn is OUR child, and like any of our children, he is OUR responsibility. We look for the ways we can make changes. We haven’t had a rule book . We have worked by trial and error. We have used CBT – instinctively..ok tell me what proof you have that it might happen….so….. the worst case scenario is??? etc etc. 
  10. We are still learning. We cause melt downs, we get lots wrong, this is like an evolution. Every year the information we give to school and specialists updates, as he grows, his ability to process changes…his interests change…but our aim remains the same. 

we want Fionn to have as independent and happy a life as he can have.

we will work as hard as we can, to help him.

it is very much his aim too.

We will continue to share our story until people stop finding it helpful.

PLEASE keep letting us know what you think? – It matters to us all!

helen x

 

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