April ~ Day Twenty Seven

Have you ever gone non-verbal? To clarify, I am talking about communication without speech/the spoken word. Being non-verbal means relying on other avenues of communication.... facial expressions, eye gaze, body language, position of body, shrugs, noises, gestures.

With this in mind I wrote up a new framework for an activity we did the other day. My goal for this activity was to focus on non-verbal communication, joint attention and co-regulatory patterns.


Activity:

Unstacking the dishwasher (again!)


Roles:

I pass a plate to Nick.
Nick puts it on the counter
x3

We swap roles
Nick passes me an item
I put it on the counter
x3

We swap roles
I pass Nick a cup
He puts it in the cupboard
x3

We carry on in this manner until the dishwasher has been emptied.

Note:  Nick's edge+1 will be the continuous changing of roles.


Limits:

No distractions... doors closed to keep out the dogs! Aim to have an empty dishwasher. Do not use speech.


Communication:

No speech. Use facial expressions, noises, body language, gestures. When changing roles, move my body to a new place to communicate the new role. Slow down and wait for Nick to pick up on my non-verbal cues. Relax and go with the flow.


What happened:

If only I had filmed this! We coordinated our movements beautifully. After handing Nick the three items, I stopped in my tracks and then deliberately moved my body so that I was standing away from the dishwasher and closer to the bench. He immediately picked up on this cue and took on his new role. We continually referenced each other for information and adjusted what we were doing as we went along. Our engagement was a wonderful example of what can be achieved without speech. The joint attention was WOW and I am so thrilled that our simple activity turned into a successful little dance between the two of us.

Flowers are more interesting than pots and pans!

Contemplating communication....

Last week:

Nick stood beside the locked gate that lead outside to the car park. He looked to me for assistance. "Ah, we need the keys", I said. As he gazed towards the keys on a nearby bench, my friend hurriedly picked them up and passed them to Nick. "It's this key, the yellow one, see here... it's the yellow one". He took hold of the key and tried to insert it into the lock. I waited patiently. I knew that it would be difficult for him, however, I wanted him to persevere and also to ask me for assistance if he needed it. My friend watched this for a few seconds (no more than 10 seconds) before jumping in to help him. As quick as a flash, she put the key in the lock and was saying, "turn the key, turn it towards Mum, turn it this way. Nick fumbled, and again my friend stepped in, she gripped the key and unlocked the gate for him. 

The result? Nick was not given the opportunity to think for himself and make a plan. He was bombarded with a lot of language and too many instructions. It was overwhelming and caused him to become anxious. It was not a positive experience. 

I was just the same before being introduced to RDI.  I thought it was necessary to continually prompt Nick. I figured that the best way he could learn was by rote, consistent repetition and rewards. However, it didn't work that way. The more commands and directions he was given, the more static his thinking became. (To this day, the only way I can get him to close his lips is to say, "do this" and model the instruction by closing my own lips). Each time I gave him an instruction or stepped in to solve a problem I was actually taking away opportunities for him to learn and grow. I wasn't empowering him to use that brain of his!

This morning: 

We are in the kitchen. Nick is putting away his breakfast items and I am unloading the dishwasher. I take out a cup and then pause. I wait for Nick to look towards me. As his eyes meet mine, I hold out the cup... he looks towards the dishwasher and then back to the cup in my hand. He understands that the cup is clean and needs to be put away. As he takes the cup and puts it into the correct cupboard, I get ready to hand him another one. I set up a gentle co-regulatory pattern of giver/putter and Nick follows my lead with ease. 

I remove the glass jug from the dishwasher and hand it to Nick. He hesitates for a moment, not sure where to put it. I pause and give him time to think of a plan. He is still unsure, therefore I shift my eye gaze to the pot cupboard. He immediately follows my gaze, opens the cupboard then drawer and puts the jug away.  

Still working with the giver/putter pattern, I pick up a clean saucepan. I casually comment, "I wonder if Nick can remember where this goes". He takes the saucepan and again he hesitates. Again, I give him plenty of time to think about what to do. I decide to make another declarative comment, "aha, it's your spaghetti saucepan". Nick now knows exactly where it belongs! :)

We continue to unpack and put away until I choose to finish the activity. I let Nick know that we are done by saying, "thanks for your help, I will do the rest". Off he goes...... his demeanor suggests that he feels calm, happy and competent. It was a positive experience.

By making the simplest changes to my style of communication I am now empowering Nick to use that brain of his!

* slow down the pace
* pause
* less imperative language
* no direct prompts
* no commands/instructions
* don't overwhelm with a lot of words
* more declarative language/comments
* use self talk 
* use eye gaze and body language
* keep pausing
* remember ~ the engagement is more important than the activity


Give it a try. The results are addictive! 

Through the eyes of a stranger

Our favourite place 7am

This weekend has brought about the quiet realisation that my son is profoundly autistic and also has an intellectual disability. I, of course, have always known this in the back of my mind, however, it is not something that I have wanted to think about too deeply. Let's face it, there is always the hope that something miraculous will occur in order to make him more like his peers.

It is not going to happen. Nick will never be like his peers. Am I okay with this?

No, not really......

Whilst I accept Nick for the person that he is, I still mourn for the person that he could have been. 

I mourn the fact that I have to make provision for his future. I have to be prepared for all eventualities because as it goes, he will outlive me and who will look after him when I am gone?

Our favourite place 9am

On Friday we went to visit a residential facility that wasn't very far away from our favourite place. In fact we planned the visit to coincide with our weekend at the cottage.

As we drove into the grounds of the facility, we were immediately struck with the peacefulness of the surroundings. The Manager was a lovely woman who genuinely cares for the people who live there. She spent over an hour and a half with us, explaining how the facility was split up into areas of ability (gulp) and how the days were structured in order to be productive and meaningful for all.

We wandered around the grounds, visiting the different houses that catered for the residents. We were blown away with how happy everyone seemed and it was reassuring to see they were treated respectfully by the many staff. 

Nick was not happy and showed his stress by continually tapping my shoulder and saying "car". In all fairness, we were there for a long time and he was included in the walk and talk. **Woohoo, love that he can now say "CAR"**

Our favourite place 10am

It was hard not to observe Nick through the eyes of the Manager. From her perspective I could see my boy's limitations and his inability to integrate with the other residents. Through her eyes, I understood why she took us to the residence that looked after people who had high needs. Through her eyes, I understood why she placed particular emphasis on the fact that they did have residents that were low functioning (her words, not mine).

I observed the Manager watching Nick and taking note that his stress level was actually not that bad. Through her eyes, I understood that she would *consider* placing Nick on the waiting list. Through her eyes I saw Nick sit with the residents and to which she exclaimed, "oh, he does look to be social!"

However, through my eyes, we hit a snag. If Nick was to be placed there today, he would be unable to participate in any activity that is organised for the residents. He would be totally dependent on the adults around him. He is only able to communicate with those nearest and dearest to him. I can only but imagine how scary it would be for him to be left there without us. Yes, the facility is for intellectually disabled adults, however, Nick is autistic and the facility does not cater for autism, although they were quick to say that many of the residents had autistic tendencies. 

Regardless of the fact that they don't know autism like I do, I will still be applying for a place for Nick. It is my Plan B as I have to ensure that all my bases are covered. If he is accepted onto the waiting list, I have at least 10 years to work on Plan A.

Our favourite place 12 noon

There you have it. A few reflections on the reality of our life!! :-)

RDI ~ framework orange!

My hub's loves his daily glass of freshly squeezed orange juice. Nick also used to drink it, although for some strange reason, now refuses to have even a tiny sip! Bit of a shame really, considering that Nick has had a bad head cold this week and he would have benefited from the extra vitamin C. Anyhow, such is life!

We have been a bit slack this week. Let's face it, who wants to put in the extra effort of *doing stuff* when feeling awful! It is now the weekend and we are nearly ready to get back on track with our latest RDI assignment. For the next couple of days I just want to spend time easing Nick back into some nice co-regulatory activities and throw him a little curve ball here and there for that extra challenge.

Reminder: Two years ago he would refuse to interact with me in any way at all, unless it was to do something that he wanted me to do!

Back to the oranges!

I have had a small bag of oranges sitting on the kitchen counter for the last few days. Bit of an experiment really..... as in, who would put them away!! In the end I could take it no more and decided to take advantage of the opportunity and write up a framework plan using the oranges as an activity for a planned engagement.

As in all interactions with Nick, I ensure that we both have a role to play. There are a variety of role actions to choose from and I decided on a contingency pattern ~ this is where I take a turn and then Nick takes a different turn. Therefore, for this particular framework, I would take an orange out of the bag and then hand it to Nick. He would then put the orange into the fridge.

My goal was to add some variations to this established co-regulatory pattern. Firstly, I would pass him a few oranges, one by one. Then I would throw him a few oranges, one by one (throw the oranges towards him and then add variations by throwing up, right and left). I also planned to give him the empty bag and observe to see what he would do with it. The challenge for Nick was to adjust to the changes in variation. 

Reminder: Two years ago, it was extremely difficult for Nick to participate in any set up activity that also involved me. He would get very stressed if he felt that any demand was being placed on him. (Note: when we first started with planned engagements, each activity lasted for only a few seconds). Nowadays, time is not such a big issue, although I am very aware of how far I can challenge him, taking into account the *edge plus one* concept.

Another important factor to consider is making sure that there are no distractions. This means turning off all electronics and/or removing interests that do not involve other people. In this case, it means turning off the stereo, sending the dogs outside and asking Thomas to give us some space.

When writing up the framework, I also put thought into establishing some activity limits. When would I end the engagement? If Nick became stressed, what would I do? Should he indicate that he had had enough, how would I react? Would I just push him that one little extra step so that the activity was finished on my terms, not his? In this case I felt confident that Nick would cope with the activity, even with the extra challenges. Therefore, I decided to end the activity after the bag had been disposed of. I also decided that should Nick show signs of going beyond his level of competence, I would smile my way through any protesting and move on for a couple more *seconds* and then end the activity.

In all of my interactions with Nick, I am mindful about my communication methods and giving him the opportunity to think for himself. When writing up a framework I always establish what style of language I want to use. Do I want it to be a non verbal activity where Nick will need to read my facial expression and body language for information? What declarative phrases can I use to suggest to Nick what may happen/what can be done? What can I say to spotlight a successful moment? With any style of communication that I use, the emphasis is on guiding Nick to hear and/or see what is happening, process the information and then make his own decisions.

One of the most important points that I need to remember, is that the activity is only a prop. My ultimate goal is engagement with my son. The framework is all about what I need to do in order to guide Nick. If it doesn't work out as planned, then I will reflect on what we have done, learn from the experience and then write up a new plan. If all goes well, then I will think about our next step. It's a great habit to get into: Take Nick to his edge of competence and then one more step. And then again... always moving forward.

In order to remain focused it is helpful to choose a mantra for each framework. My mantra for this particular framework is;  Remember to pause, remember to pause.....