Thursday, April 28, 2011

From the bottom of my heart!


I have been reading The Autism Experience book by Valerie Foley...... and what a really great experience it has been. Valerie has divided the book into chapters on what life with autism is like and all the bits and bobs that go with it! The before stuff, the in-between stuff, the coming to terms with it all stuff and a little bit of the after stuff! What is so extra special about each chapter is that Valerie has added the different perspectives of friends she has made over the years. Friends who have children (or grandchildren) with autism and some of those friends are also on the spectrum.

It is a book in which everyone has a voice and that voice is listened to with respect, regardless of the 'route' they have chosen to take.  I could relate to many of those stories, although I also shook my head at a few of them - but each to their own! :)  At the end of the day, each parent must choose what they feel is right for their child and their family. (Haha, did I just say that!! I can see a couple of my friends shaking their heads in disbelief because I have generally been quite vocal about what I think is right!!!)

I do think that the book will be a great reference point for parents who are just starting out on the autism journey and also to those who have been travelling the road awhile (just have to sneak in that I would love to see more parents looking at autism from a developmental perspective! sorry, I couldn't resist!!). I found the book easy to read and at the same time, uplifting (but then again, I am an old mum!).  At one point in the book I thought to myself, crikey, these mum's are handling everything so well and wow those kids......... why can't mine be like that! THEN I hit the chapter called 'Worst case scenario'. Yes, here was the reality - and folks, you all need to know the reality!  I know it is really hard for new parents to read this stuff and I am really sorry about that. I recall one mum in the book (child age 4) writing that she would be on antidepressants for the rest of her life - but, she won't be - time heals, we become tougher and stronger and we stop sweating the 'small stuff'. The biggest problem we face (and this is for the mums who have children who will battle to become independent!) is what happens to our children when we die. This is the worst case scenario for me - the rest I can handle (so far!!!!)

I started reading the chapter 'If I could turn back time' and began thinking about my journey with Nick. What would I tell my earlier self? What have I learned and what would I do differently?
  1. STOP, get off that fast train of helping everyone else and joining committees - there will be plenty of time for that later!
  2. STOP, stressing so much about education - it is not going to fix Nick!
  3. STOP, breathe and enjoy my kid..... connect, connect, connect!
  4. STOP, take time out for myself!
  5. STOP, drilling my child........... life must be meaningful and interactive!
  6. STOP, passing my child over to other people!
  7. STOP, filling up Nick's day with school, therapy and more therapy!
  8. SLOW DOWN!!
Shite this list is getting a bit long. Best I STOP now! Am I beating myself up for all those things that I 'should' have done way back then.... a bit, however, I will get over it! :)

Thank you Valerie and all the wonderful contributors. I am sure that your book is going to be a huge success...... and I think you all should do a follow up book in a few years time...... :)

~*~

P.S. To the mum who was thinking about starting a trust for her son but has decided to wait until he is 15 - don't wait.......if you can, do it now!

9 comments:

  1. Di, I hope you don't mind, but I'd love to share this review of the book.

    Again, your perspectives are so valuable and honest!

    :)

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  2. Hithere :) I am Carrie (from the book) thanks for sharing this with us. I have re-read what have written and would add so much more now! I too would tell my self to slow down and not do so much therapy but am also scared that if stop would they go backwards? that is a fear live with every day! never knowing am I doing too much or not enough? life is hard and scary but it is also beautiful and amazing :) we have extrodianary children we are so blessed to have them in our lives :) take care
    CaRRiE :)

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  3. Believe me ... Once we get this book distributed worldwide, we will be working on another one. First hurdle is to get it published outside of Australia.

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  4. Fantastic post. Good advice regarding the trust fund. It is something that I must put in place.

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  5. Thank you, I really appreciate your feedback! :)
    @Carrie, you have all the time in the world - why would they go backwards - they have you! x

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  6. Hi Di,
    I'm Kate
    I am a book contributor too and what you have written here is so positive and constructive.
    We bought a house with a granny flat with the future and trust fund concept in mind... A scary thought and as you point out one we must face sooner rather than later.

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  7. I loved your list of STOPS!!! Amen. They are so wise, they are worth repeating:

    STOP, get off that fast train of helping everyone else and joining committees - there will be plenty of time for that later!
    STOP, stressing so much about education - it is not going to fix Nick!
    STOP, breathe and enjoy my kid..... connect, connect, connect!
    STOP, take time out for myself!
    STOP, drilling my child........... life must be meaningful and interactive!
    STOP, passing my child over to other people!
    STOP, filling up Nick's day with school, therapy and more therapy!
    SLOW DOWN!!

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  8. I've stopped reading autism books, but maybe this one is worthwhile. You are doing a great job with Nick, don't beat yourself up about what you could have done. Thanks for sharing, M x

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  9. i loved your list of stops
    Huge fan of Valerie Foley here too

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