Monday, February 25, 2013

RDI ~ wise words from Kyra


Many years ago when I first heard of RDI I started scouring the internet for information. I also signed up with a Yahoo group called RDI Mid Atlantic (or something along those lines). From following link after link after link I came across the following post. The words really stood out for me and so taking into account each point that is mentioned, I started changing how I communicated with Nick. 
Last week, after hiding away for many years, the post reappeared on another Yahoo group. I thought it very worthy of sharing so wrote to the author asking for permission to share her post. With all due respect to the author, RDI has changed somewhat since the early days, although the following gives a very good explanation and starting point on how to achieve a connection with your child and each tip works... I can guarantee this! :)
Thank you, Kyra, for allowing me to share your wise words. They are as helpful now as they were then. 
For interest sake, this is the link to the blog post that I have used below. Getting started with RDIYou can also find Kyra in one of my all time favorite books, (the other being, The Autism Experience).
(Image pinched from Amazon!)

Over to Kyra.....
Okay, getting started with RDI is actually much easier than you think. I mean, the concepts are easy and readily employable. The practice of it, well, takes practice. It’s one of those uncomplicated but hard to do things since you are breaking habits and starting new ones, becoming more conscious of your pace and communication style, working to slow things down so your children have more time to process. They need it.
And they need it in a low pressure setting. You cannot underestimate how much that will be felt by your child or how much the pressure to do, be, or say has had on them. I believe kids on the spectrum are all far more sensitive that the typical person, with a much thinner filter. Everything affects them far more than we realize. Things can easily be felt as a BOMBARDMENT. 
Disclaimer: I am NOT an RDI consultant. I am just this mom, weaving RDI into my household, modifying it along with our consultant, to best suit my own individual guy, my Fluffy. The things I am about to say may come as a shock to you–no! no! That’s from another story. The things I am about to say here are what I’ve said to parents who’ve contacted me, wanting to know what they could do to get started. They like the sound of RDI but they are saving up for a conference or are on a waiting list for a consultant or are completely overwhelmed and isn’t there anything I can say to help them find some footing?
Well. Yes! And here it is.
SLOOOOOOOOOOW DOWN
For us, this was the most important thing BY FAR.  Slow down. Slow down the pace of interaction, the rate of speech, the amount of things you are attempting to accomplish, and the length of time in which you are attempting to accomplish said thing. Become an under achiever  in this regard.
SIMPLIFY
Simplify routines. Cut out all therapies/trips/ outings that don’t feel essential.

TALK LESS

This is huge regardless of how much language the child has. It’s as critical for a child with few words as with guy like Fluffy with thousands. Use less words and utter them more slowly.
Don’t feel you must turn into an automaton or speak                like            this          in       an      odd        way, but notice just how fast you might be speaking and how much you might be saying and try slowing it down as much as you can and still sound like yourself. Pause before you begin speaking. Add pauses as you speak. Before you answer a question or launch into an explanation (for those with more verbal kids) think about it, literally. Say, Hmmm, or, Huh, or, Ummmm. Make a face of thinking about it. Consider a way to answer the question or convey the information in the shortest, simplest way. Or even don’t answer the question even if you know. Find the wonder in the question and respond from there. How does the freezer make ice. Huh! Hmmm. I wonder. Let there be space. See what happens. Don’t fill in.
Try looking at the clock and spending 15 or 20 minutes and resolve not to ask ONE question, just to see how it feels, just to see what other ways you could express what you want. It’s not that asking questions is against the RDI law (!) but paying attention to how much of our communication IS imperative will help us shift to a more INVITATIONAL and less demanding mode of interaction. One substitution that I use a lot is the phrase, “I wonder”. I wonder what we could do next, or, I wonder how that works, or, I wonder if there are any sticks over there.
RDI is all about taking a child through the social developmental steps and stages they missed. It relies on years and years of research in child development and neurobiology. Our kids are DELAYED. If we can look at a child’s social development and say, this 5 year old is socially at a 2 year old level, why not the same thing with communication?
I know from listening to other RDI parents of nonverbal or very low-verbal kids that they make a true leap of faith when they switch to or start RDI since RDI doesn’t ‘teach’ language. We didn't have that issue since Fluffy never stopped talking but the truth is, communication is not about how many WORDS a person has. You can watch an interaction between a parent and a one year old and see how much is communicated long before words are spoken by the child.  One needs to see how language develops in the typical infant and toddler: tone, prosody, expression, gesture–these all come first, then receptive language, then a word or two, then syntactically INcorrect 2 or 3 word sentences. And all this happens gradually and, this is the most important part as far as RDI is concerned, it all develops in the CONTEXT OF RELATIONSHIP. Brain research has shown that this is extremely important in the laying down of new brain pathways, that is happens more dynamically, more quickly, more organically when it is done in the context of a relationship.
NON VERBAL COMMUNICATION
Use non verbal communication as much as possible without it being overly weird or creating undo anxiety. Nod you head for yes or even smile or thumbs up; shake you head or make a BIG frown for no; shrug shoulders for I don’t know; make a VERY puzzled face when you aren't sure; open wide your mouth for surprise or astonishment. Overall, exaggerate facial expressions and body postures. Now, not ALL THE TIME like you’re having a three stooges-a-thon, but throughout the day. This is a way to heighten the moment, refocus the attention, plant it back IN THE RELATIONSHIP between you two rather than in the WORDS being said or information being conveyed.
EXPERIENCE SHARING LANGUAGE
Shoot for about 80 % Experience Sharing language versus 20 % Imperative language, the ratio in typical kids and adults. Imperatives are any kind of communication that require an answer. Here are some examples off the top of my head:
(1) What color is that?
(2) This boy looks…..? (for him to fill in the blank)
(3) What’s that?
(4) Tell me what you’re doing?
(5) What did you do today?
Experience sharing (ES) language is any communication that is about sharing an experience together, when you are talking about what matters to you, where what you are creating together is more important than a particular answer or outcome. So, in the above examples, ES alternatives might be:
(1) I love that color!
(2) Gee, I wonder what that boy is feeling.
(3) Hey! That’s cool!
(4) Wow. I am so interested in what you’re building.
(5) This morning, I took a walk on the beach.
That last one is a biggie. Fluffy often didn't answer those sort of questions, what did you do this morning, or this weekend, because he didn’t remember or he wasn’t sure what you meant, when this morning? What part of the morning? What part of the weekend? That’s an eternity to a kid, especially one with autism. His perfectionism made it hard to answer because he didn’t want to be wrong, or more to the point, because accuracy is important to him and if he couldn’t be accurate, he ignored it. When you share from your own life, it opens things up for him to share from his own life, and then there can be no right or wrong.
Remember that all sorts of short sounds and words are examples of Experience Sharing language. Uh oh! Hmm. Oops! Wow! Ahhh. Cool! Whoa! Yipee! Tadaa! And often, one of those is all the words you need.
PRODUCTIVE UNCERTAINTY
Begin to think about the concept of productive uncertainty, which really means, acting in unexpected ways from time to time,  doing the silly or goofy or ‘wrong’ thing to create moments of pleasant surprise and an opportunity for facial gazing, a self directed desire to look at someone’s face to share pleasure or to get more information. You can have an OOPS! moment or a OH! SILLY MOMMY moment or Uh Oh! that’s not what I meant! moment together.
Productive uncertainty example–at the grocery store, putting items from your cart onto the conveyer belt. You pass things to your child, he places them on the belt. (Or you pass things from the shelf to your child safely seated in the cart, he tosses them behind him in the basket.) After you have this pattern established, you do something unexpected, like casually hand him your shoe or your wallet and then, hopefully, he will stop, look at it and then at you and then you can hold his gaze in a silly moment of , oh, no, that’s not right! maybe say, Oops! and then go back to handing him items from the cart. If all that sounds way out of your league at this point, just think of unexpected things you can do. Get in the back seat of the car with your child and pretend to drive, answer the banana when the phone rings, put your shoe on your head, put on your coat, call out Bye Bye and walk into the closet.
It’s the kind of thing you can play by ear, get the sense of what works for your child. For Fluffy, I had to make it seem as if sometimes I really did make a mistake, did and said the wrong thing, forgot something, used a spoon to cut the bread, etc. which helped him with perfectionism, helping him be around others doing things imperfectly so it took some of the sting out of his own need to do it all perfectly or not do it AT ALL. Sometimes I let on that I was being silly and it was just about sharing a laugh, but be careful that you don’t get into entertaining FOR rather than sharing a moment BETWEEN. You also don’t want to overdo the uncertainty and cause anxiety. The goal is to keep your child at his edge, on his ‘toes’ but in an alert and engaged way, not worried and off balance and certainly NOT afraid.  My take on it is that it woke up Fluffy’s OWN DESIRE to perk up to what will happen next. Little by little, and I do mean little by little, Fluffy is developing a tolerance for the unexpected, learning to not only be okay with it but to actually enjoy it, look for it, and create it himself.
ANTICIPATORY MOMENT
Look for ways to spotlight the anticipatory moment. When I first heard that I was all, wha–? But it’s actually very straight forward. Spotlight just means underline, pull a moment out and help it to be noticed, slow down, pause, exaggerate your expression. The anticipatory moment is simply the moment BEFORE something happens. The moment BEFORE you pull the item out of the bag, the moment BEFORE you turn the page in the book to find out where the funny rabbit is going, the moment BEFORE you blow the bubbles, the moment BEFORE you let go of the balloon and send it flying through the air. Think of how you are naturally with an infant. Think of your pace, your tone, the way your voice lilts and hesitates. Think of the way you use repetition, as pattern formation and not as STATIC systems, you do almost the same thing but not quite, there is variation but subtle, like a sweet, slow moving game. Think of the faces you make, how big they are, how long you hold them, think of the way your simplify your body language and your movements. Think of playing This Little Piggy and the moment BEFORE the last little piggy goes wee wee wee all the way home!
Now, I’m not saying you ought to be doing this exactly with your child, as if they were an infant. But just think of it. There is a reason we all do the same thing with infants and toddlers. We are naturally going at the pace they need to take it in, to learn about patterns and relating, about communication and back and forth of interaction.
am saying, very simple games are wonderful ways to work on the basics of RDI. Hide and Seek, Peek a Boo, This Little Piggy, any lap songs where you sit your child on your lap facing you and do something that has a surprise in it that you can slow down and help them anticipate. Fluffy and I play a game I got from an RDI mom. We call it, Here Comes.  You sit face to face, or sit over your child as they lie on the floor facing up at you. You say, gently, expectantly, “Here comes a…” and DRAW out that moment, the moment BEFORE you say the next word, with a smile, raised eyebrows, soft inhale, letting him/her know something nice is coming, but…what? Keep the words and things simple and sweet. I do,  Here comes a…kiss! Here comes a…raspberry! Here comes an… Eskimo kiss! Here comes a…piggy all the way home! Fluffy loves it!
We also have races all over the house. I’ll say, Let’s race to the…(draw it out!) BEDROOM! and then we’d take off to the bedroom. Next: To the…FRONT DOOR! To the…BATHROOM! You can toss in a little productive uncertainty and say, To the…BATHROOM! when you are already standing right there. Oops! Silly me! We’re already here! Fluffy loves to run so he was highly motivated to play this game when we first started and still is. It’s worked through the stages too. Stage 1 is Emotion Sharing so it was all about having fun with each other. Stage 2 is Referencing so he had to watch me to know when to start–he could only go when I smiled or nodded my head. Stage 3, where we are now, is Coordinating Actions so now we try to get to our destination as a team, at the same time.
RDI is really a way of being with your child. It’s more about adopting a certain communication style then employing discrete moments of therapy, and when you do that, it builds trust. I don’t know about anyone else, but whenever I focus on trying to get Fluffy to DO something, when I am attached to the outcome and TASK,  it is a major NO WIN situation. He feels it and resists and I get more tense. We are at the threshold of a power struggle or at the very center of one. Now, there are times when you have to pull out the stops, safety, health, boundaries. Yes to all of that. But I’m talking about putting the relationship first. Everything is done in the context of the relationship. That is where the action is, BETWEEN us, not IN the activity or the object or in the skill or script.
RDI stands for Relationship Development Intervention, after all.  It is about slow and gradual change. They call it a marathon not sprint. It’s hard to trust that at first when we want so much to see progress for our child but the thing is, you DO start seeing progress early on and that builds confidence and the motivation to continue. And then you can start to relax, to let go of the emergency, to rediscover your instincts and ground as a parent.

Saturday, February 23, 2013

Looking FAR into the future

Nick is growing fast and I am finding that the years are zipping by far too quickly for my liking.

Although I tend to keep my head in the sand regarding Nick's future, I do on occasion *think* about what is ahead and have a mild panic attack. I have written about my friend who had a terrible car accident and suffered head injuries. Well, it's been nearly four weeks and she still lies in ICU. There continues to be progress, however, it is going to be a very long haul and as yet we don't know the outcome. 

It is horrible, it is sad and I miss her. 

It is a wake up call.

My Nick is going to need life long care and I live in a country where there is very little in the way of facilities for adults with special needs. The places that are available have long waiting lists AND they are not keen to take anyone with a diagnosis of autism. Basically, we are stuffed!

What to do?

What to do?

I don't have a problem with Nick living with me for the rest of his life, however, my life is going to be over before his. What happens then?

We could set up a small group home. It is daunting, although possible.

We could move to the UK. Too cold!

I do have a hankering to move *back home* to New Zealand. However, are the options there any better then here?  Something to look at!

Moving country would mean losing our lifestyle and friends. Who knows if my first born would even want to move! Am I prepared to give it all up?

What to do?

What do you think?

What are you going to do?


Monday, February 11, 2013

Thinking about activities


When it comes to planning any type of RDI engagement with Nick, I sometimes struggle to think of an activity that I could use as a prop for that engagement.

Nick can be a bit of a tricky customer, in that he is limited in what he can do. In part this is due to his motor planning issues and lack of imagination. He does not have any interest in playing independently and he needs a lot of guidance to ride a bike, kick a ball, draw or paint! He really battles with something as simple as brushing his teeth.

The advantage of Nick’s limitations is that there are SO many activities I can introduce to him. Anything and everything I do with Nick will be a learning curve for him and an awesome opportunity to engage with each other. I am very aware that the interaction is more important than the activity, although I think that it can be a two way street, as the activity can also be a learning tool.

For a while now I have been focusing on the chores that need to be done around the house. You know..... cooking, cleaning and all that other fun stuff that needs to be done daily! It has actually been working out quite well and I have discovered that Nick is quite happy to get involved with food preparation. 

Nick is also a whiz at the supermarket. Shopping with my boy is such a breeze these days and it provides further engagement opportunities. I am sure that we look quite a sight in the isles, as at times we have a bit of a throwing contest. For example, I might toss a carton of milk to Nick and he will then deliberately throw it into the trolley (he is very aware that I want the carton to be placed carefully!). *Ooh, I have just thought of an idea ~ we can have a throwing activity at home but use breakable items such as eggs!

Now that we have added two dogs to our family, I have also been setting up planned engagements in which we have to collect the dog toys, feed the dogs or even take turns to throw the dogs a ball. 

Just for interest sake I am going to list a few examples of simple activities I have chosen in the past and continue to build onto, step by step.... 

Cooking

* I collect an item from the cupboard and pass it to Nick. He places it on the counter
* I give an item to Nick and he places it in the cupboard
* Together we put the items away
* I measure out ingredients and Nick puts them into the bowl
* I pour an ingredient into a bowl and Nick stirs 
* I stir, Nick stirs
* Together at the same time, we spoon the mixture into another bowl
* Nick adds an ingredient to the bowl and I stir
* I pass Nick a dirty plate and he puts into the dishwasher
* Nick holds the jug and I turn on the tap and together we fill the jug
* I cut up the vegetables and Nick places them in the saucepan
* Together we put the rubbish into the bin

Very simple co-regulatory activities, yet initially very difficult for Nick to do. Through my guidance he now feels competent with all of the above. 

My next step is to now think about his next step! How can I expand on what he already knows? What can I add that will be a little challenge for him? What can I do to invite him to take that one step beyond his level of competence?

Onwards and upwards.......


~*~


If you are on facebook you can find me and my boy by clicking on this link..... Bright Side of Life!

Tuesday, February 5, 2013