Saturday, August 10, 2013

Intensive Interaction ~ Sara's story (Part Two)



Sara is talking Intensive Interaction. You can find the first part of her story HERE.

Tom's home programmes prior to I.I were not addressing the core of Toms's autism. Tom did actually learn some things (the kind of things usually acquired after the first year in typical development and usually more consciously) through these therapies, but they were further polarising his strengths and weaknesses. Because of the way in which the therapies were delivered, they also had detrimental unintended side effects: he learned that we disapproved  of his choices, that we were there to put unending demands on him and that a relationship with us was a terrible thing. We gave him no alternative but to withdraw deeper into 'Autism Land'. Through these therapies Tom became unhappier, more stressed, more distant - basically more autistic.

A clever boy

Because Tom was clever, his home programmes had taught him many things. This is how Tom was when we began Intensive Interaction.

He was verbal ~ very verbal with clear speech and a wide vocabulary. He would ask for things. He could read, write and tell the time. He sang hundreds of songs and he was bilingual, yet he used NONE of these skills and talents to communicate in a social way. Tom did not call us or use our names at all. He didn't show or share. Heartrendingly, he couldn't seek comfort from us when he was anxious or in pain; and generally, he preferred to be as far away from us as he could get. Furthermore, he had no sense of self, he never looked in the mirror or referred to himself. He could read and write, although he also didn't use this to communicate; rather he spent his day repeatedly writing out film credits, letters or numbers.




A child-centred therapy

Back then, when we were just about to start I.I., the idea of following our child's lead was a difficult and a completely new way of thinking for us. We had run non-stop, full time, educational home based programmes for our son since shortly after his autism diagnosis at 2 1/2. Our emphasis had always been on bringing Tom into our world.  Suddenly we found ourselves in a scary place - doing a therapy that was based on the complete opposite philosophy; and so it was with suspicion and fear that we entered our son's World of Autism - a world filled largely with film credits, letters and numbers.

Five years of taking 'stims' away from him or restricting them had not had the desired effect of broadening his interests to other things, but had possibly had the opposite effect and made him want them even more! In the years since that time, I have come to believe that consistently taking 'stims' away from a child when you have no idea of their function can have a sledge hammer effect.

One of the many functions of Tom's 'stims' was an aid to blocking out the world when it became overbearing and he simply couldn't deal with it. He was also using them as a way to cope with physical pain (he had severe bowel problems, headaches, etc). I now believe that by forcing my child away from his coping mechanism, I was unintentionally breaching his basic human rights.

We were very pleasantly surprised when we changed our attitudes. Just though the simple act of joining him in his world we immediately saw results. There aren't many quick fixes in  autism but in that instant that you join your child you put an immediate stop to their social isolation. He no longer wanted to get away from us all the time and instead began to take an interest in us. He began to see the potential of us. His 'stims' instantly changed their function. They were no longer something that he did on is own and something that made him unreachable, rather they were a way for me to connect with him.


This was because, just by joining him, we were showing him that (a) he was worth spending time with, (b) we found him interesting, (c) we had stuff in common with him, i.e. shared his interests; and (d) we approved of his choices and interests. Tom's self esteem began to grow and in fact this was the beginning of a sense of himself as an individual (Tom had never previously referred to himself or to anybody else, he'd never even looked in a mirror).

I began to shift my views on Tom's autism ~ whereas I had previously considered him to be unreachable, suddenly I realised that we were unreachable for him. I thought he was a poor communicator but realised that during all those years, Tom had been attempting to communicate with me but my communication skills were too poor to understand him. His 'stims' that I had previously detested because they appeared to take my son away from me were now a way for me to get close to him.

Emergent Outcomes

Intensive Interaction has a very different kind of structure and has no goals or objectives in the way that we typically understand those words, yet Tom's learning took off! The things he was learning are known as 'emergent outcomes' ~ that is ~ the adult provides the right circumstances and scaffolding and the child learns. We do know that children with autism will begin to acquire the skills that young babies acquire, but they also acquire many other outcomes that are difficult to predict. Yet they do come! This is very hard for some adults, very hard to let go, to stop controlling and also to trust that, given the right circumstances learning will happen! And because this type of learning is based on the parent-infant interaction, because it is not man-made but rather designed by Evolution/God/Mother Nature/The Gods (pick the one you believe in) it is far more complex and delicately balanced than any programme we could come up with by ourselves. It took me a long time to understand that something so simple could give so much; and that he was actually learning more and also more quickly than when we had very complicated programmes with umpteen objectives in place for him.

So despite my reservations, despite the simplicity of this intervention, despite the lack of objectives, despite the different type of structure or, in fact, because of all those things I am continually delighted by the amount of learning and other wonderful things that happen for my son through this beautiful, natural, free flowing therapy. It just keeps on giving and day by day I watch him transform into a more sociable, self aware, confident, playful, loving, flexible, communicative and above all, happier little boy.


To be continued......




5 comments:

  1. Sarah I can relate to your story! Especially my youngest, but both my boys definitely became more rigid, more obsessive, and more behavioral as I tried to push skill son them! When we started RDI it was a breath of fresh air with putting away all the performance demands and just *hanging out*....so that they could again trust that I was not going to overwhelm them. I suppose I was quite overwhelming always trying to get them to do something haha. I saw such beautiful things from that time that helped us be able to move on..to the remarkable progress they have made.and while it sounds like my jouney went a different route, I totally use the twins example video ( my autism one presentation)as an example of how we cannot skip development!! Always exciting to watch experience sharing emerge... after that engagement the sky is the limit!!! ( as we can see with NIck!!! :))

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  2. Sara you sounds like an amazing mother, I wish I could be like you - I too am at the early stages of an RDI programme, and I had already worked out that forcing my son into 'my' world was not working, but sadly I don't really enjoy his world much. But I can pretend, and this way of life certainly seems to be helping him x

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  3. I haven't been able to comment before as I have been too technically inept to sign in but have found this odd way to do it!
    Looking for Blue Sky - I wish I could be more like the way I must be coming across too!!! I really am not amazing and spend too much time beating myself up about my faults (which I haven't written about!) It took me a long time to learn to enjoy my son's world. In fact I used to HATE it. I used to see stims as something that took him away from me. I saw (and still see) them as a symptom of medical illness so couldn't believe they were the real him but actually they are his way of communication and now they don't take him away from me but actually allow me to be close to him!
    Thanks Kathy too for your kind comments. I think Tom was particularly demand resistant or at such an early stage of development that RDI was too demanding for him. Joining was not instinctive to me and in the end I was forced to try it!
    Good luck all on your journey xxx

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  4. Hi Sarah, I think we ( myself included) get wrapped up in labels, joining, hanging out, etc. RDI, both as a parent and consultant, is very percise about performance demands and how this effects the child..and is more focused on the experience and the decision making. This can involve being interest led as we need to help our kids understand the why bother!!! Then the guiding relationship continues to move them forward as this is how typical children continue to experience their world,.but yes our children are all unique ( Im thinking of one family I work with)...where he is at the stage where he is overwhelmed with guiding and its because he cant *feel* himself in the experience ( like when you exercise and you legs are a few steps behind). So our guiding focuses on his interests and his "Payoff" to being engaged with his parents. I totally get how performance demands can be well ....demanding haha One of my two was like this... I joined in his world with interest led guiding through the early stages of RDI, so Im surprised to hear of your experience with a particular RDI consultant. Regardless Im so happy that you are making progress with II ....again thanks for sharing!!

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  5. I agree with Kathy in that our RDI programme had underlying goals but how & what we used to target those goals was our decision. I joined Lissi in things that she was interested in doing, she liked cooking, art projects, singing, at age 12.5 (& older) I would sing Disney songs with her that I knew she loved from the age of 3 adding pauses to build anticipation - just as one does in games like peek-a-boo. A bit further into our programme I would also use things that she loved to do but would slot in slight variations that were within her level of tolerance, for instance changing the words in the Disney Song but for something she also found amusing. In the early days we also just hung out doing things like touching feet then pulling away & so on - similar to games you play with a very young child / baby. Once she began to seek us out we could include her in things we wanted to do to - there was an emphasis on 'not trying to get' a particular response or performance from her & that is why I believe she flew with RDI.

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Thank you for taking the time to leave me a comment. x