Sunday, June 17, 2012

RDI - then and now (part one)

To acknowledge Nick's thirteenth birthday, I spent hours upon hours trawling through photographs. It was a huge trip down memory lane and not all of it was good! As much as I love each photo that I chose for Nick's birthday blog post, I do find that the pictures miss the essence of Nick. Each picture portrays a happy, without a care in the world, boy. What you don't know is the story behind each picture..... 

Perhaps you are unaware that Nick is severely challenged. He does not speak, although he can communicate. He cannot write but he is learning to read. He is unable to ride a tricycle but he can find a video clip on my phone without any trouble at all. Over the years his anxiety has prevented us from leading a normal family life. In fact it still does! However, we have come to terms with our way of life and we choose to move forward. 

I have also been going through my video archives (do you think that all of this reminiscing is a middle age thing?!!).  Anyhow... I found some video footage of Nick that was taken in May 2007. It was a big *wow* for me because I can see how far my boy has come since then.

Prior to the first video clip below, we had been following a typical path. Nick was having regular Speech and Language Therapy, Occupational Therapy, Physiotherapy and ABA. He attended school with a facilitator and he also had a private tutor in the afternoons. Oh, and don't forget the drugs (for him and me!) Yep, it all cost a pretty penny! 

What was I doing while all of this was going on? Well, my major role was to be Nick's carer and also his taxi driver! Believe me, it was not a lot of fun! Eventually I came to realise that something wasn't quite right with this picture. Nick was having loads of therapy AND I wasn't involved. In fact, I couldn't do a darn thing with him, except read him stories!

A few months before the first video clip was taken (May 2007), I started hearing talk of RDI and it rang a few bells for me! To cut a very long story short, we decided to have Nick assessed by an RDI consultant. The following video clip is part of that assessment. I chose this clip to show you (in all of its negativity!) because this is how Nick was back then. If you think he was stressed here, you should see how he was for me! Not good!!!



After the initial assessment, a plan was put in place for us. Sadly, after a few months, we discontinued with our consultant and the Connections Centre.... this was back in the days when we didn't have a good internet service blah blah blah.... Any video footage that we took would have to be burnt to a DVD and then *posted* by snail mail to the USA! That didn't work for us! Therefore, we just bumbled along with what we knew and I kept up to date with my reading. 

In 2010, we decided that the time was right to re-establish our relationship with RDI. The following two activities were filmed as part of our assessment for an RDI consultant in the USA.

By the time I got to take this next bit of footage (October 2010), we were doing well with our *non verbal* communication. Nick understood that he needed to reference me for information. We could go to the supermarket and easily communicate to each other from afar. However, we still weren't quite on the right track. You can see from this clip that Nick still gets very anxious when he feels under pressure. To be honest, I also wasn't sure what I was doing! Although I was aware of using declarative language, I spent too much time being *non verbal*! I wasn't able to *get into the groove* of being declarative! :-)



Both clips show Nick's anxiety and his desire to leave. Both clips show how I am expecting Nick to *read my mind* and to know what to do. Which of course he couldn't do! The clips also show that I am unsure on how to define our roles and set up regulatory patterns. Each activity went on for too long and frankly, there isn't really any real engagement between us! I could analyse both clips until the cows come home.... but this post is getting a bit long and I still have a way to go!!! :)


~*~


This final video clip was taken a couple of weeks ago. It is not the best clip that I have of us interacting; however, I do think that it is a good example of my style of parenting and Nick's involvement in what we are doing. Nick's role was to stir the sauce at the same time as I poured the milk. This is quite a difficult concept for him so I took it slowly. Due to his motor planning difficulties he also battles to stir! 

I also want to quickly spotlight a few time codes for the video clip... just to give you an idea of what stands out for me!


0.15:  Nick went to pick up the milk. I thought this was important to note because it shows that he is aware of the pattern and that he realises that he has a role in the interaction!

From 0.38: Nick went a bit vague.... so I paused and waited for him! Important to make note of this because it showed that I was taking my time and just waiting for Nick to reconnect.

2.00: I spotlighted that Nick was mixing and I was pouring...  I was making a point of reminding Nick what we were doing.... highlighting our roles!

2.11: Nick indicated that he wanted to leave but I had already decided that I was going to add a little challenge... I wanted him to place the jug in the microwave!

2.29: I went to the microwave and waited..... AND Nick picked up the jug and put it into the microwave!! YAY  :-)



The activities I do with Nick are always about engaging with each other. The activity is the *prop* which lends itself to creating roles, patterns and opportunities for interaction. We take tiny steps and as Nick becomes competent and confident with something new... then we take one more tiny step!
~*~

Yesterday, I had to take Nick to puppy training with me. We rocked up to a park that he has never been to before. His role was to carry a camp chair down a long path and then a steep hill. I got caught up getting the dog out of the car and Nick went ahead of me. I knew that I couldn't catch up with him, so I watched to see what happened next. He walked towards the dog trainer, saw a log.. put down the chair and sat on the log. There was no anxiety to be seen. He was relaxed and totally blasé about the whole experience! HUGE!

~*~

20 comments:

  1. It is both wonderful and inspiring to be able to be a part of your family's journey with autism and RDI, Di.

    It is so clear that Nick has benefited hugely, and will continue to benefit in partnership with you.

    I love when the reminiscence shows us the advances!

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  2. Fantastic Di! So lovely to see the progress you have made - both you and Nick. I can definitely empathise with 'not knowing what you're doing' sometimes in the early days - it can be a difficult mindset to get into, the guide mindset....there are so many things to think about when in the role of a guide! But practice makes pefect, as we can see from your more recent clips and from the lovely description of you both going dog training :):)

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  3. One thing I know looking at Nick and that is that despite the challenges he faces, there is a very good brain in his head. This is in no way being patronising. I watch the videos and look at his eyes and I am convinced of it. And as I have said before, Di, you do an awesome with him.

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  4. @Valerie ~ I am extremely fortunate that you are sharing this journey with me... seriously, I learn so much from you! Thank you for your lovely words. xx

    @Zoe ~ It certainly takes a while to come to grips with that guide mindset!!! Although, as you know... so worth it in the end. I realise that we are not progressing as fast as a family who has a more able child, however, I am delighted with what we have achieved so far.

    @anautismdad ~ Hi there H, thank you for taking the time to read my long post and for your thoughtful comment.

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  5. It's great to see about all the positive changes, and very interesting to watch your interactions: they are similar in many ways to how I interact with my special girl, even though she is much more severely disabled. I'm sure there's lessons there for how I treat aspie boy too x

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  6. A very moving account, Di. And one that I relate to 100%. What a road of commitment and courage parents of disabled children walk with every tiny achievment big cause for joyous celebration. Andrea

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  7. @Blue Sky ~ I love that my ways are similar to yours. There are always lessons to learn... for all of us! :)

    @Andrea ~ It is quite a road and a seemingly never ending one at that!! Let me know when you are next in Durbs as would love to catch up with you! x

    Thank you both for your lovely comments.

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  8. It is just amazing to see how far Nick has come. You efforts and dedication have paid off big time. It is heart warming to watch the videos
    tom

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  9. You have done and are still doing an absolutely amazing job. These milestones may seem trivial to others but to parents with special needs children then are huge.

    Nick is a fine young man and has a very positive future to look forward to.
    CJ x

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  10. @Tom Brown ~ Tom, thank you for being okay with me putting video footage of you and Nick on my blog! :) The time that you spent with us was invaluable and I can't thank you enough.

    @Crystal Jigsaw ~ You are so right, the milestones our kids reach are huge to us... which is a good thing. Having a child with special needs really does make me appreciate life so much more. Thank you so much for commenting. x

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  11. I'm so used to seeing Nick quiet, mindful, and engaged that the first two videos were shocking! It looks like we started our RDI journeys at almost the same time in 2007. (I started in March 2007.)

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    1. Hi Tammy, Nick has progressed so nicely that I forget what he used to be like! My boy is such a gentle soul... even when pushing the dog off the bed! Hee hee! :)
      I like that we started around the same time, although I did have a large break between consultants.

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  12. I am seriously impressed with this. Your dedication is pretty wonderful XXX

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    1. Thanks, Jean. Believe me though, I am not super mum and I do try hard to maintain a balance in all areas of my life! :) xx

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  13. Wow! Lovely to see how your son has grown and developed! Well done to you both x

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  14. With hindsight, what do you think you should have done differently in the two clips where things didn't go well? (I'm asking because I'm also currently trying to do RDI without a consultant, so I'm trying to learn as much as I can about how to do it.) More declaratives, obviously... I'm thinking, with the first one especially, more prompts and waiting for him to try things and trying to find the edge of his competence & scaffold him past that? Have I got that right? Are there bits I missed that you think would have been a good idea to try?

    Would also love to learn more about how you did the non-verbals as that's what we're currently working on - don't suppose you've written any posts on that?

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  15. Hi Dr Sarah
    Without looking at the clips, I would say that I agree with your comment about using more declaratives. I would be hesitant to use more prompts due to the fact that my aim is for Nick to think for himself. Yes, I want to take him to his edge of competence, although I only want to take him one more step past that (plus one). When I write up a framework for an planned engagement I carefully consider how I will be scaffolding and the language that I use... being particularly mindful that I am making suggestions and not prompting him what to do. Does that help?
    I have some non verbal posts, although I did write them when I first started blogging.... they could be better! :-) Here is one of my first posts.. http://brightsideoflifeasd.blogspot.com/2011/01/non-verbal-communication-part-one.html
    Feel free to ask questions.. either here or on my facebook page!
    Di

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  16. Thanks for the link, Di! What a lovely clip of the two of you together interacting... but I'm not sure how to make that happen with Jamie, as either he'll be talking a blue streak about his computer games, or his younger sister will barge in and interrupt us. Will have to keep thinking about that one and seizing opportunities for non-verbals when I can!

    I may not have been clear in what I said about the prompts - what I meant was that there seemed to be bits where, when he wasn't getting what he was meant to be doing, you responded by simply telling or showing him, and I was talking about using a prompt instead (i.e. using them to replace the 'telling what to do' bits rather than the 'waiting to see if he can do it' bits).

    Love your blog and the video clips! Thanks again.

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    1. Dr Sarah, it is hard for me to comment on your situation, however, I do know that there are many strategies that will help with the constant chatter.

      Sorry if I also wasn't clear about the *prompts*... my own fault for not watching the video again!! It is all a big learning curve and the beauty of videoing is that it enables us (me) to go back and analyse everything and work out my next step... style of language etc! :)

      Thanks for your support.

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