Adventure Journal ~ Oh My Nerves!

Two years ago I took Nick to Cape Town. The trip involved a two hour plane trip and all that went with it. We were away from home for three nights and Nick coped exceptionally well. I was elated.

Nick has now been on a few more trips to the Cape and one to Zimbabwe. He has been carted here, there and everywhere! Since that initial trip he has become familiar (and comfortable) with long queues, waiting patiently, noisy airports, crowds, small spaces, going to new places, meeting new people, visiting restaurants AND eating restaurant Spaghetti Bolognaise.

The fact that he has been so flexible with each new adventure is huge. That memory bank of his just keeps growing and with it comes confidence and increased resilience. I am sure that it isn't easy for him, however, he is very aware that he can look to me (and the rest of the family) for help and reassurance. The iPad is always on hand for sticky moments or chill time.

This week we are pushing out all the stops and taking Nick overseas. I have been very relaxed about the 'idea' of it all, although now that the trip is imminent I am feeling a little nervous. Here we are, taking a severely autistic teen on three plane rides to get to our destination, one of which will be an overnighter. My wine consumption has already increased! :)

We have chosen to have a very low key holiday. We are based in one place and will take life very slowly. There won't be any pressure to get in all the sights and if Nick spends extra time on his iPad, so be it.

Wish us luck!

Old Girl on the Block

No more
She quietly whispers
No more endless net searches
No more reading research

No more
She gives a wry smile
No more stress about food
No more worry about muscle tone

No more
She whispers respectfully
No more music therapy
No more O.T.

No more
She is over it
No more listening to bullshit
No more liaising with drama

No more
She recalls lack of time
No more people in and out
No more therapy day after day

No more
She is sneakily sceptical
Of snake oil and such
Promise of cures, of this and of that

No more
She thoughtfully ponders
No more public speaking
No conferences to attend

No more
She sighs
No more avoidance
No more head in the sand

It is what it is
She draws in a deep breath
A mother with a difference
With Autism in her life

It is what it is
She swallows a lump
A mother who is like no other
With restrictions and an invisible cord

It is what it is
She blinks furiously
A mother entrenched in disability
With end of life worries

It is what it is
She looks with adoration
A mother who loves beyond measure
With a different life perspective

Bring it on
She yells out
No more dwelling on 'what if'
Time to shift the balance

Bring it on
She bangs the table
No more with the woes
Time to refocus

Bring it on
She grins
No more all about him
Time to tilt those scales

Bring it on
She smirks
No more with the pandering
Time for challenge and growth

Bring it on
She lifts her shoulders
No more being the mum who can
Time for the girl who was

Bring it on
She straightens her back
No more worrying of what might be
Time for positivity and a glass half full

Bring it on
She says with confidence
No more stuffing around
Time to move forward

Bring it on
She is adamant
Time is about today and tomorrow
Bring it on
One life, live it

R2BC ~ September 2015

My family decided to come and visit me in South Africa. Woohoo, much excitement. 
We had an extra special time together and built up a huge bank of awesome memories. 
Picture shared without permission! :p

Image captured by Niki van Velden Photography

The end is in sight for my Project 365. The year has flown by quickly and I have enjoyed 
the challenge of figuring out my camera. I have a lot more to learn and no doubt will
share a few images on this blog. 

Image captured by me

We have a little adventure coming up and the countdown has begun. Watch this space!

Nick's calendar


Ojo's World

Non-verbal communication

"When Nick was a little boy he showed no interest in looking at my face.  He didn't look to me when I called his name.  He had no understanding of the concept of reading facial expressions and body language.  During those years I did a lot of reading and I came across all sorts of explanations for this. For example; People with autism find it scary to look at a face. People with autism don't see the whole face - only a part of it! In my personal opinion, I do believe that Nick didn't have a problem with looking at me, or any other person for that matter.  He just didn't know WHY he needed to look." My blog post, January 2011.

To help Nick understand the importance of referencing my face and body language for information, I kicked off by using non-verbal communication. I exaggerated my facial expressions. I overplayed the use of my fingers, hands, arms and shoulders. I got down to Nick's level. I gently invaded his body space (touching his knee/arm/hand to get his attention). The sounds coming from my vocal cords were guttural and I used my tongue to click and cluck! A real comedy act, yet one that worked a treat.

Going non-verbal also worked for me. I slowed down my thoughts and reactions and became far more mindful of how I communicated with Nick. I found that I paused more frequently, giving us both the opportunity to think about our responses.


I am at the kitchen counter. Nick is sitting on the sofa, facing away from me.
I gently clear my throat.
Nick gets up and wanders over.
He references my face and then looks at the apple in my hand.
I mime cutting the apple.
He picks up a knife and passes it to me.
I reference him and shake my head for "no".
I look towards the other kitchen counter.
Nick follows my eye gaze and spies the apple cutter.
He collects the cutter and gives it to me.
I place the cutter on the apple and then step back.
I reference him with a wide eye look.... and gaze to the apple, the cutter and then back to the apple.
Nick follows my gaze and then proceeds to cut the apple.
He collects a bowl, gives it to me and then walks away.
He is expecting me to put the apple in the bowl!!
I make a little noise (hmmmm). Nick looks at my face.
I raise my eyebrow, give a little smile and then gaze at the apple.
He comes racing back. :) 

It is wonderful that we can connect/engage naturally over such a simple little interaction. It's worth giving non-verbal communication a bash. It really has been a win for us.

Declarative Language

I am a huge fan of using declarative language with Nick and I really enjoyed reading the following post written by Linda Murphy. You can find the original over at.... Peer Projects ~ Therapy from the Heart

Declarative Language

One thing that we feel makes PPTFTH unique is our communication style with our clients. We mindfully use declarative language in all of our interactions, because we know this speaking style does so many things! For example, it helps children feel comfortable because it is inviting in nature, rather than demand based. So many of the kids we know with vulnerable language or social communication abilities shy away when faced with interactions that are based in questions or commands. It develops inferential thinking: declarative language does not tell children what to do, but helps them to know what may be important to notice, so that they can then draw important conclusions on their own. It leaves room for children to take action, thereby encouraging spontaneity and independence. It helps develop curiosity, as it plants seeds of wonder in the minds of others. It supports problem solving because it emphasizes and spotlights the process of problem solving, over getting the right answer. It creates reason for social interaction, as it helps kids notice and think about others within naturally occurring opportunities.

Previously, when I have written on this topic, it has been in relation to individuals with ASD. However, those who use declarative language and promote its use (such as Kristen Jacobsen and Sarah Ward, the gurus in executive function), know that it is truly an effective strategy for most language learners and communicators.  It is especially effective for those struggling with executive function, and more subtle social communication difficulties. A child need not have a diagnosis of ASD to benefit greatly from this strategy. 

So, what exactly is declarative language, you wonder? With declarative language, we are essentially thinking out loud for the child to hear, so that he or she can benefit from our models, and start to do the same for themselves: Think, notice, wonder, and essentially, appreciate that there is a thinking process behind all that we do. Declarative language allows us all (kids and adults) to slow down and think, become better observers of our environment and other people, and take note of those moments when a decision may need to be made. 

Declarative language helps us move away from being product focused (do XYZ!!), and instead appreciate the process behind all that we do. It allows us all to hang out in moments that are less certain, rather than panic or feel like we have to do something quickly, simply to get it done. If we can help our kids become more comfortable with those moments where they feel less certain, or less sure of themselves, we will most definitely be on our way to great things.

Here are some nuts and bolts: 

Declarative language is:

  • commenting, or making statements, out loud about what we think, notice, remember, feel, wonder about, observe, etc.
  • flexible. It allows for more than one possible way to respond. Often we may not even realize this until the child responds in a way that is different from what we were expecting, yet still completely acceptable to the situation!

Declarative language may include:

  • cognitive verbs, or verbs that talk about our thinking process such as think, wonder, know, remember, forget,decide, and imagine.
  • observational words related to our senses such as noticehearseesmell and feel.
  • words or phrases that communicate emotion such as I’m not sureI like, I don’t like, I feel happy, silly, excited, afraid, nervous, embarrassed, or upset.
  • first person pronouns such as I, we or us.
  •  words of uncertainty or possibility such as maybe, might, possibly, perhaps and sometimes.

Declarative language is NOT:

  • questions or commands that have a specific right and wrong answer.
  • demanding. With declarative language, we make a statement that invites a response, but does not require, or demand, it.

Here are some examples to get you started:
I’m wondering where your shoes are.
I notice your clothes did not make it into the hamper!
I’m thinking we might need some forks.
I heard your friend say that she wants to use the red crayon when you are done.
I notice that you really like that swing.
I forget what you said you wanted for lunch.
I notice it is almost time to change classes.
I see the other students are starting to pack up their belongings.
I just remembered that we need milk for this recipe.
I could really use some help carrying this bag.
I realized both you and your classmate like Legos!
I didn’t like when that happened. It made me feel a little nervous.
It made me really happy when you said you like playing with me.

In my experience in working with parents, I know that shifting to this speaking style can be hard work. It requires us to be more thoughtful in our communication with kids, and therefore requires us to slow down (and who has time to slow down, right?!). But, because this is what we want our kids to become someday: independent individuals who can problem solve, connect with others, and be thoughtful in their decision making, it truly is worth the effort. 

Authored by Linda Murphy MS, CCC-SLP