Untherapy

We watched another RDI presentation from the RDIOS site last night. It was great - again. I'm pleased that there are eight of them, plus ongoing access to 'webinars' which are like seminars over the web.

I've always struggled with how to explain RDI to the people who ask about it. I um and ah and feel like I'm losing myself in technical words about guides and apprentices. So it was great to hear Dr Gutstein describe RDI simply as 'un-therapy'.

It's not 'therapy' if we understand therapy to be something extra or special or unusual. It's just helping the child learn normal child development. The difference is that we have to slow it down, break it down and do it in a quieter, more deliberate way. It's a second chance to do what everyone else does - grow and develop those relationship connections in the brain.

I love the term untherapy. It sits nicely with 'unschooling' which is my other latest interest.

I love my children

What a great day. I really enjoyed the children today. They were a pleasure and a joy to be with.

Some of the highlights:

Problem solving. The picture shows Bright Eyes getting a solution to his problem of being thirsty next to a bubbler that was just too tall for him. I thought that was pretty good. That's his sister walking up by the way. She likes to get into photos...

Bright Eyes and his sister in the pool. It was too cold for me so I sat and watched as they jumped in together and had a ball. Bright Eyes referenced her, waited for her to jump and sought out her face for the emotional response after the jump. He invited her (not bossed her) to join him, and copied what she did as well.

A complicated game of cubby-houses. I rearranged the lounge room so there is a great space behind the sofa - perfect for a cubby house. It's out of view too, so I don't worry too much about the mess. The three of them set up beds, problem solved when the baby wanted all the beds to himself, and played happily in the morning, not even missing their normal TV time.

Bed time. Bright Eyes and his sister go to bed together in our room. They read and play for a while until it gets dark. Tonight when I went to calm them down and say goodnight, the two of them were tucked up together pretending to be twins, looking as cozy as could be.

Original speech. I can tell when Bright Eyes is using his own words compared to a script (even when I am unaware of the script) because he gets his parts of speech slightly wrong. I find it cute, and I'm encouraged by it because it shows he's processing and trying things out. Today, I put a hot pancake pan under the tap and it did that big sizzle steam thing. He was standing nearby and reeled back, saying "I'm afraiding of the hot!"

RDI therapy time. We played a game today which worked really successfully. We had a bounce on the mattress on the floor, then fell over together and looked at a card from a simple 'charades' game. It gave an object or a simple action so we talked about it, and then acted it out for a minute or so. A couple of times he didn't want to do the action (skipping and fishing) so we chose another card which he preferred.

Then we did an up in the air game, landing wildly on the mattress. "I'm a boy, and I'm broken" he said. He would crash, and then say "I'm broken" so I would be a doctor and fix up legs and arms, ears and nose. He took a turn to fix me up when I got broken.

Finally, I let him use the Thomas trains he brought in with him and we played an interactive pretend game, chuffing around together and talking to the Fat Controller here and there. It wasn't a script he was following, although there were elements of the stories he knew in the play, but a genuine shared experience.

Apprenticeship

I was going to write today about how hard I was finding the whole guide/apprentice relationship thing. It has seemed that Bright Eyes fights everything I want to do with him, so I have not been doing a lot of it.

However, today I decided that we would do more together, so I made sure I held him close, gave him time to process everything and left opportunities for him to be competent in his task.

We did...

...laundry. I took his hand and led him in. "We need to get the things out," I said, looking at the door of our frontloader. He opened the door, and I took his hand to help me pull the wet clothes out. We also loaded some things in, I got him to put the soap poweder in, and then he closed the door and did the setting.

... and sorting. I asked his big sister to supervise this as he has not ever been interested when I've done it. However, she didn't have much success either. So I put him on my lap and handed him to clothes to throw onto the piles. He participated and almost had fun despite his reluctance!

Therapy time was very successful. I decided to do painting because I'm concerned that he shows no interest in fine motor drawing or writing skills. I had bought some new paints and no-spill paint pots, so we organised them together, unscrewing the lids and pouring the paints in together.

We ran into a little hiccup when there was a pot for green, but no green paint, so we had to figure it out together and mix up some green.

After that we got to the painting. We had a number of opportunities for making various shapes into different things. At the end we made 'butterfly' pictures, where you paint and then fold the paper over and get the same print on both sides.

I was delighted when he came out with two different labels for our last paintings. One was 'a waterfall' and the other was 'a forest'.

Safety and stress

We get the regular RDI newsletter via email, which this week had a particularly good article in it by a consultant named Thomas Brown. Here are some very interesting quotes from it. I'd love to reproduce it in full, but it's long and I'd probably be breaking some copyright laws. For a 'proper' journal article about RDI, follow this link.



Many times I am asked, "How long will it take before we see some progress?" I would really like to say, "Miracles can happen over night."

The reality is, like most other things, it takes work, dedication and patience.

The RDI® Program is a dynamic, changing process that follows a developmental model. It is unusual in the fact that we are NOT changing one discrete element or one discrete behavior.

For many kids, we are literally changing how they view the world, how they respond to changes and we are placing a lot of new demands on them. These changes are done in a gentle, loving and safe manner that gradually allows the child and, perhaps, more importantly, the neurological systems to change.


It is usually high levels of anxiety and fear that cause them to want to control a lot of elements of their life. This control can lead to difficulties with flexibility, rigidity and wanting things to always be the same... and when the anxiety and fear become too much, they are flooded with biochemical stress hormones that can cause major meltdowns.

As we give the child the tools of referencing and gazing, both for information and safety, we also give them security with knowing that everything is O.K.

As we spotlight our emotional interactions with them, we build on positive episodic memories that allow the child to reflect back and realize that change from their static world to the dynamic world is safe.

Thomas Brown answers his original question about 'how long does it take' by estimating that parents usually start to see significant changes in their child in about a year. We have seen significant progress much faster than this. Hopefully it will continue.

RDA week success

We spent four days up in Sydney this week doing Bright Eyes' RDA, or Relationship Development Assessment.

It has been eight months since his first one, and it was definitely time to refocus and see where we all are at. I found the week very helpful and I have come home enthusiastic and refreshed, ready to work in better ways with him.

Improvements
A very good thing that came out of it was to see all the things Bright Eyes can do now that he couldn't do when we began. He really has improved in his relationship skills. He's far more aware of us. He can understand more. He can transition from activity to activity well. He can cope with changes and differences much better. He can follow instructions better.

And where he started right from the beginning with the RDI stages eight months ago, he has now progressed to the new 'Stage 3' objectives. I like numbers like this - they give me a feeling of achievement!

Blockages
Probably the most useful thing we discovered was that all the tantrums and bossiness that I have been complaining about (loudly) on this blog for the last month come down to the same problem - super-high anxiety.

It should have been obvious really. I've always known he was highly anxious, and I could tell that he was anxious when he screamed and ran away. I just didn't realise that the bossy words are the same problem, but in a different form. High anxiety leads to 'flight or fight'. Before, he used to flee. Now he fights.

The solution is not to fight him back or punish the behaviour. The solution is to reduce the anxiety, because once he is calm and quiet, he will quite happily be convinced or brought along to do whatever it is that we are asking of him.

Fixing it
How do we reduce the anxiety? First, be aware that it's happening. I am learning to listen for the rise in his tone - it's a tightness in his throat. Then I follow the four S rule - Simplify, Slow Down, Stop and Sssh.

Just quietening my voice, making gestures more deliberate, giving him more processing time and not piling extra options on him works a treat.

Our consultant helped us do this a few times in the sessions in her office, and it made a remarkable difference. Since then, we've tried to follow it, and we have really noticed how much easier everything is.

Objectives
We have come back with lots of things to work on, but a lot of parent objectives too. Our use of gestures and language still needs work. We also need to work hard to not get stressed ourselves when he gets uptight. Our consultant recommended one of her families buy a heartrate monitor each. I've pinned an imaginary one onto myself today and really tried to notice my own heartrate increase when his anxiety rises.

Our consultant also had a few words to our daughter to help her understand that when Bright Eyes acts belligerent, he's actually anxious.

In the car afterwards, I heard him behind us start to boss her and get angry at her after she touched him by mistake. I tensed up, ready to spring in to the altercation, but I didn't need to. Instead of biting back with the same words, she put her arm around him and stroked him. He calmed down straight away and the biffo was over.

Altogether
Bright Eyes has come home from the week away almost a different child. He certainly is happier and calmer. I feel so very grateful for this program and for our consultant, and I have a new burst of optimism and strength for the next six months. Thanks y'all for your support and prayers.

RDA week

I am very pleased to say that Bright Eyes has had a great day. Not too much defiance, hardly any grizzling or bossiness and lots of smiles, fun and eye contact.

In fact, as well as 'playing together' in our RDI lab time, he came in to my room at the end of my nap and we spent 20 minutes tumbling all over the bed together. "Get up Mum," he kept saying.

So we're off this week for our 'Relationship Development Assessment' which is where we work with our consultant for six sessions over 4 days, looking at what Bright Eyes can do, and what we do, and working out how best to attack the next six months.

I'm looking forward to it... and I think we all need it. See you all soon!

School?

We dropped in to the Early Intervention Unit yesterday in Moss Vale. It's a service that provides intensive support to children with delays in various areas. It's kind of like preschool, but in miniature, with two staff to only eight children.

We're trying to work out what Bright Eyes is going to do next year and especially in terms of preparing for school in 2009.

The Early Intervention Unit looks great (and it's free!) but I have a feeling that Bright Eyes time would be better spent focusing on RDI.

I found the quote below from Dr Gutstein in this week's RDI newsletter:

"By having school take up all the the child's emotional and attentional resources we leave nothing for the most critical objective.

What we know is that unless we directly address the core areas of Autism Spectrum Disorder, the prognosis for quality of life is very poor.

Imagine if we were talking about cancer and someone said they were so busy with homework they had no time for chemotherapy."

We've got some decisions to make!

Oh yeah... I forgot

I've been reminded today by our RDI consultant* to keep working at my use of language with Bright Eyes.

It takes a lot of effort to keep the ratio of 80% declarative/20% imperative language. I really became aware again today of how much of my speech is telling, bossing, asking, directing when I talk to all the children. I have to create more opportunities to share my experiences or observations with them to even the thing out.

As well as that, I have to cut down my total use of words and become more non-verbal. This is so Bright Eyes learns to use all methods of communication more effectively - tone, pace, body language, expression, non-verbal sounds.

Why do I keep forgetting and having to go back to basics again?

I think it's because it actually has such a good effect on him. Whenever I do get my language right for a couple of days, I can visibly see the improvements in his cognitive processing. He takes a few steps forward and starts communicating himself at a higher level.

At that point, it's easy to match his increase in language with an increase in my own. I start to fall back into old habits because I think he's improved so much, and then gradually, almost unnoticeably he creeps back into scripting and bossing and controlling his environment, which is the thing I am trying to change to begin with.

Just as well I have this blog with which to be as verbal as I like.


*This is the really good thing about working with a consultant. She is on top of things that I forget, or don't do well, or need help or new ideas with.

One sad, one happy

One sad thing

I visited a playgroup today for the first time since we moved here. It was a really nice playgroup: well run, friendly people, nice toys and happy children. I have only good things to say about it. My boys were happy and played well. I had a yummy cup of tea, and managed to say no to the delicious chocolate muffins being passed around.

Why did I feel so rotten being there then?

I hate to say it, but it's because I am still jealous of everyone else's 'normal' kids. Because I still feel like I'm just making it every day. Because I feel like I've joined a 'secret club' that no-one else there is part of. Because I feel like I've got bigger problems.

Selfish? Maybe. My husband says it is 'reactive depression' to a small loss. (He went to a seminar on depression recently.) With every big loss, there are lots of small losses. Today's small loss was not being able to go to a playgroup and forget that Bright Eyes has autism.

One happy thing

A lovely lady from our church, who happened to be a good friend of my nanna before she died, has offered and is keen to help me out with Bright Eyes' RDI. She has offered twice, once in writing, so I take that as serious!

I'm going to give her a CD of some RDI lab time activities plus some reading so she can learn about it. Then she's going to come and sit in on some lab time, get Bright Eyes used to her, and hopefully do a session or so a week, plus maybe take him for a walk here and there.

Wow!

Lab time

We spend half an hour a day doing what RDI calls 'lab time'. We go into a room with no distractions - objects, pictures or extra things Bright Eyes can fiddle with - and we engage with him, doing various activities.

In a way, the activities themselves are unimportant. What is important is the objective we're working on.

When we started out, there were two main objectives.

The first was for us, the parents, and involved broadening our communication bandwidth. Big words, but it basically means communicating in ways other than just speech.

Body language, facial expression, gasps and little noises, gestures... all of these are natural parts of communication, and are the subtle things that autistic people will often miss, as they tend to focus on spoken words only.
I try not to talk at all in our half hour together, or only say really necessary things. So I'm teaching him that we can communicate in a multitude of ways.

His main objective at the beginning was to be able to 'regulate' with me. In other words, we were working on doing things together. In whatever we did, we had to have a balance of actions - we both had to be participants with roles and responsibilities in whatever we did.

The idea is not to insist on getting the activity 'right' but to focus on the objectives instead.

The activities I started out with involved things such as:

- taking turns putting coins in the slot of a money box
- me blowing up a balloon and letting it go, and him running to retrieve it and bringing it back
- rolling or bouncing a ball between us
- playing ring a ring a rosie, or jack in the box, or other rhymes with actions where we each had a part
- playing hiding and peek-a-boo with a turn each
- playing row row your boat

A lot of the activities involve sitting at a cute little table. But we do a lot of things on the floor too. I'm doing more physical things these days - flying aeroplanes with me on my back, feet up and him balancing on my feet, or him doing headstands with support from me. I find he does better with things where we have a close 'zone of connection'.

One wonderful activity we did a few weeks ago involved me directing him with my gaze to climb onto the little table via one of two routes, then him getting to the top and looking at me, waiting for my nod to jump giggling off the table and into my arms.

Today's lab time involved:
- drawing shapes together at the table. I drew one, then he copied over it.
- I drew a face and he told me what things (eyes, ears, mouth etc) to put on it.
- rolling on the floor
- flying aeroplane balance game
- pat a cake pat a cake rhyming game

When we first started I wondered how I was going to be able to get a very non-compliant child to do the wonderful things I saw in the videos of RDI lab time. And there are still many instances where Bright Eyes goes passive and sulky and refuses to cooperate. Sometimes, but not often, we get a bit of a tantrum as well.

When this happens, I gather him up, sit him on my lap, and rock rhythmically from side to side, or front to back. He calms down pretty quickly, and will then start to take on responsibility for the rocking as well. I can feel him moving from side to side on my lap. So we are still learning regulation, doing things together, even if it is as simple an activity as that. One lab time, several months ago, I spent 20 minutes out of 30 just rocking!

Tantrums and how to deal with them II

I should add an update about our current tantrum situation.

I estimate we probably experience one middle sized tantrum every second day or so, and one major one per week.

Bright Eyes has several daily small 'reactions' to transitions, and a few yells for a few minutes when we turn off the telly or come in the door, but in general, the hours of screaming have diminished a whole lot.

(Interestingly he has never yet thrown a wobbly at preschool!)

These days I am far more careful with triggering things off. But at the same time, I am less scared of his big outbursts, which adds a certain amount of calm to the whole situation. I frequently give positive feedback for good communication or calm behaviour.

When he does get a tantrum, I still do leave him to cry it out for up to half an hour or so, depending on what else I have to do. I notice though, that when I go in to calm him down, he is expecting me, and will quiet fairly quickly. I sit him on my knee, hug firmly and gently rock back and forth. After a few minutes of that soothing activity he will usually hop off himself and head on out the door looking for something else to do.

As his brain starts to work better from the diet changes, the supplements and the RDI therapy, he is becoming less tense, less upset about change and less explosive. As his receptive language improves and his ability to express himself improves, he is more able to say what he needs and not have to resort to screaming, pounding his arms, and kicking his legs on the floor.

It all works together!