Guest Speaker at Browns School

I am not a great fan of public speaking, however, I also find it very difficult to say no! Of course it is very flattering, being asked to talk about my life with a special needs child, my child with autism, my life, what I do with my child! Within the right company I can talk about my situation until I am blue in the face! Put me in front of an audience and I am a nervous wreck, until I start talking! Then the words start flowing with some extra words thrown in for good measure. I probably waffle on! I never remember! 

Putting together a presentation also doesn't come easy to me. I spend hours, days, deliberating about what I want to get across, what I am going to say and how I am going to blend my words with a powerpoint! Then there is the practicing of presenting the presentation........ until I am so sick of my words and I start to question myself, are they the right words? Finally I get to the stage of 'it's good enough', I can do no more!!

I have attached my presentation to this post! You will see that I have added in photographs of my powerpoint to *blend* in with my words! Thankfully, my 'talk' for Browns was only around 15 minutes, so you will find that my notes are a very quick read! 

My words below are just that... a reminder to me of what I want to talk about. I don't generally read my notes verbatim, I use them as a guide. Therefore, what you read below differs somewhat from what I actually said at the time! Same words said differently! 

Why was my presentation so simple? Why did it not have a lot more information about communication? Why did I not lecture to the parents and staff about the IMPORTANCE of creating connections/building relationships? There is so much more I could have said!

In that audience were 30 children, 30 children with Autism Spectrum Disorder! I may not of been aiming my words at them, however, they were the ones I was mindful of.

Thank you for inviting me to speak today, it’s great to be here!

As you all know, there is so much to talk about when it comes to autism!  Education, medication, anxiety, sensory issues, motor planning problems, speech, people we meet along the path, creating a balance in our busy lives, coming to terms with our situation, workshops and conferences….. The list is endless!

It took me a while to decide what I wanted to talk about!  In the end, I thought it best to go with the easiest option! So therefore, I am going to share some information about my son Nick and how we play around with communication!

Before I start, I would like to read you the following paragraph and please bear these words in mind throughout my presentation.

“Children with ASD found to experience particular difficulty with: gaze shifts, shared positive affect, joint attention, using a range of communication means and functions, use of gestures/non-verbal’s, social affective signaling and imitation.”

We are a family of four. That’s it. We don’t have any other family in South Africa! My family live in New Zealand and the UK. Allan’s family live in Zimbabwe. This photo of the three of us was taken at a rugby game. Sadly, we can’t take Nick because the people and noise would be too overwhelming for him. He is also much happier to stay at home and play on the computer! 

12 ½  years old
He is unable to talk, although he can say a few sounds. His favorite sound at the moment goes something like this….. “sh….t”!!

Nick can’t write his name, he can hold a pencil but he doesn’t have the ability or the muscle tone to actually draw or write.

His math’s is hopeless…. He knows his numbers but he really battles in this area

Nick has sensory and motor planning issues!

He is unable ride a bike or climb a jungle gym!
Nick doesn’t know how to play, he has never shown any interest in playing with cars, ball games, building towers of lego…. You name it, he doesn’t do it!

However……….

This boy of mine loves books, he flips though magazines and books looking at the pictures and he will often stop and point out something to me.  He also really enjoys me reading to him and I always try to include him in the process.  It goes without saying that he loves T.V, computer, music and the iPad ~ all typical kid stuff!!

He LOVES school! JIn general he is a happy and gentle kid!

Even though Nick doesn’t have speech, he can communicate and what is so nice is that he is beginning to point out things of interest in his environment.

He is interactive child and he loves being with us!

These are some of the communication tools that we use with Nick

Basic sign language

GoTalk 20

Lightwriter

iPad

Nick has basic sign language, although generally he will only use one sign at a time, he can’t blend more than two words together to make a sentence. We also use the GoTalk20 and he enjoys interacting with this, however, he can get over stimulated on repetitive sounds. Nick knows all of his letters and he can find his way around a keyboard with ease. He uses the Lightwriter at school and although he should be using it at home, I must admit that we are a bit slack!  The iPad is a recent purchase and I also bought Proloque2go. This is a great app for communication purposes, although at the moment we are using it more for story time. We have a lot of fun creating story communication boards.  Mind you, Nick is much more interested in playing simple word games or actually listening to stories on the iPad, OR if he can get away with it, cruising YouTube!!

Now, these tools were effective in getting Nick’s needs meet! However, over the years, as I have learnt more and more about autism, I realized that Nick had missed out on a lot of his early developmental milestones, especially those concerned with communication. He was unable to express himself in an experience sharing way. He didn’t realize that he could reference my face and body language for information. He was unaware of the power of non-verbal communication!  

There was no real ‘connection’ between us!

One of the ways I went about helping Nick with this, was to change my communication style….

Due to Nick’s lack of speech, I found that I overcompensated for this by endlessly repeating instructions and observations. I always jumped in and spoke for him. I didn’t give him the opportunity to learn to look to me for further information. I didn’t allow for the fact that his processing was slower than the average child. I would say something to him and because there was no immediate response, I would repeat myself. Therefore, he was still trying to process the first piece of information and I then bombarded him with more words!!

I have decreased my verbal communication! I am now more mindful of ‘NOT talking too much’.

I have also increased my non verbal communication. I use a lot more facial expressions and gestures. I also use noises to gain attention or to spotlight something worthwhile.

Being mindful of non verbal communication helps create that connection between us!

Because Nick takes longer to process information, I am very aware of giving him at least 45 seconds to respond in any way. Thereafter, I may make a subtle movement, touch him gently, and make a comment or even a noise!

Pausing within an interaction helps us both;

It gives Nick the time to process what is happening, think about the interaction and then to respond how he sees fit.

Pausing also helps me ~ it gives me the time to reflect on my interaction with Nick and it gives me time to consider what I am going to do or say next.

It is very important to me that I allow Nick to think for himself. It is all too easy for me to jump right in there and ‘do’ everything for him BUT in the long run I am not doing him or me any favors!

Pausing helps create that ‘connection’ between us!

Declarative language v imperative language

Declarative, experience sharing communication is any communication that is meant to share your ideas, feelings or experiences.  Imperative communication is any communication that requires a specific “right” answer, or that is making a demand.

I try to use declarative experience sharing language to invite Nick to respond to me. I am giving him the opportunity to think for himself. He doesn’t have to respond but the invitation is there if he would like to!

Again, I used to give him endless instructions ~ words that required an immediate response without any thought being put into that response. We all do it automatically, Come across any toddler and we say, “What’s your name?”, “how old are you?”  This style of language really didn’t work for Nick!

An example of using declarative communication…… Its lunch time and Nick is a bit unfocused and he is more interested in sitting on the sofa flipping through the pages of a book!

However, if I make a comment, “Oh, I am so hungry, I would love a piece of toast!”

And I then wait….

I can see that Nick is ticking over the information in his brain, and invariably he will then jump up and go to collect the bread.

Using declarative language helps create that connection between us!

I have chosen three short video clips to show you. They are roughly around one minute each.  I am not a film maker so the quality is not that great. I have also made a point of choosing three different activities to show that the changes I have made in my communication style can be used at all times, no matter what we are doing.

Throughout this game you can see that we each have a role. I am going to be placing an item onto the plate and Nick is also going to be placing an item onto his plate …. And we are going to be doing this using a simultaneous parallel pattern! However, as we are about to place our items, I throw Nick a bit of a curve ball. I start waving my piece around and it throws him out. This is a good example of how I waited for him to get back on track! 

In this clip, we are walking together to collect everything that is needed for lunch. You will see Nick race off ahead of me… I stopped my action and waited for him to come back to me. When he does come back to me with the bowl, I then make a point of retracing his steps but this time we do it together. 

I like this clip because it shows Nick coordinating his actions with mine. We have a nice regulatory pattern going on.  Nick is referencing my face and body language for information.

What I have just shown you are some simple examples!

So, just to recap…….To help encourage meaningful interaction I take into account many things.  

 I SLOW DOWN!

 I give longer processing time

 I pause frequently

 I use less language

 I use more non verbal communication

 I use declarative comments to invite Nick to respond

In any interaction I do with Nick, I take care to ensure that he has a role!

 In any interaction with Nick I take care to ensure that he has the opportunity to think for himself!

I have found that by making these changes and being mindful about my communication with Nick has made a huge difference to our relationship. 

I would like to end this presentation by reading to you that paragraph again!  I copied it from the handout of an autism workshop that I recently attended.

“Children with ASD found to experience particular difficulty with: gaze shifts, shared positive affect, joint attention, using a range of communication means and functions, use of gestures/non-verbal’s, reciprocity, social affective signaling and imitation.”

Do you know, I listened to over 7 hours of presentations at the autism workshop and not once in any of those presentations was there any mention of addressing these core deficits in a meaningful, experience sharing and dynamic way! This one paragraph was it!!  (*I do recall waffling on quite a bit here!!!!) Although this fact was disappointing, I feel comfortable in the knowledge that I am addressing these issues with my son.