Autism awareness ~ that burning question!

I have been dwelling on this post for a while now. It is not the most fascinating subject to spend time on. In fact, it is a subject that I don't really want to think about.... it is too damn depressing!

It is that very big scary question. The question that causes sleepless nights and that horrible little knot in the pit of my stomach. The question that rears its ugly head whenever I am planning a trip away from my child/children. The trip is two months away and already I am stressing..... I guess it wouldn't be so bad if we lived closer to family BUT we don't. Therefore I have to make a plan for the kids, just in case. I have to write a letter of wishes should it be needed. I have to leave numbers and instructions. I have to phone my family and tell them what to do, just in case! I imagine the worst case scenario and it plays inside my head. I visualise my family pulling together to collect my children.

This big bad question pops up at unexpected times.  It is brought to my attention at support group meetings. It peers over my shoulder as I get closer to my birthday. It's rolling, rumbling, gathering speed. Generally I can grab that horrid thought and push it into a corner of my mind. I hide it behind the worries of creaky limbs, a forgetful memory and menopause. I stick my head back into that sand.

But I have this one constant in my life,.....a living, breathing kid with special needs. A kid who is going to be dependent on me for the rest of his life. Can you see where I am heading here?

I am getting older and my boy is growing so fast. His body has lost that wibbly wobbly puppy fat and his limbs have become very long and lanky. The face is all spotty and there is dark hair above his top lip. His voice has deepened and the *noises* he emits are reminiscent of the low rumblings of a lion! As for the other parts of his body, let's not go there......

Oops, I got a little side tracked!

It is not the growing up that concerns me. In fact I am really enjoying the growing up part. My worrisome thoughts are......... What do I do when he is all grown up? What do I do when I wake up one morning and realise that I am very old? How the hell am I going to look after him then. This is South Africa, people! As far as I know, there is very little in the way of residential care for adults with classic autism. What does he do when I am no longer here?

What will happen to him when I die?

I was given my child's worse case scenario when he was a wee tot. Never did I think that we would be living the worse case scenario. I certainly didn't realise that time would pass so quickly! We need to start thinking about our son's future because it is knocking on our door today!

To finish off my post I am going to share this little bit of video footage. It has been many years since I last saw Nick climb a jungle gym and this clip really puts a smile on my face.

I have now packed away that *question* and tonight I will be dreaming of my boy with the long skinny pins climbing up that jungle gym and shuffling down the slide!

Night night x


RDI ~ Observation and Imitation

We have been assigned a new RDI objective and it goes something like this;

Observation and Imitation

I need to provide opportunities for Nick to observe me demonstrating small things that I do on a day to day basis; and it needs to be something he is not used to doing. I then need to revisit that same activity a few hours later and observe to see if Nick is capable of memory retrieval and can imitate my previous actions.

As mentioned by our consultant; "The Challenge- Even though we will observe the goal of being able to carry out an action, we are looking, in this case at the goal beneath the goal of observation and imitation, leading to the understanding of the intent of observation to be able to carry out a goal"

"Nick observes carefully while you demonstrate a simple cause and effect action that results in a clear outcome. This observation will then carry over to understanding the relationship between observing and actually taking responsibility in doing it."

Sounds easy, right?

For the sake of this blog post, I am only going to focus on one framework....

*Making a cup of tea*

My aim was for Nick to observe me opening the cupboard and taking out one cup, the canister of teabags, the canister of sugar and a teaspoon. I also planned to make declarative comments to highlight each item. Due to other commitments throughout the afternoon, I decided to wait three hours before revisiting this activity. Then our roles would change, it would be my turn to observe and Nick would be responsible for taking out each item.

The following (very short) video clip shows both interactions 

Hmm, this wasn't as easy as I thought it was going to be. You can see from the video clip that Nick was aware that he had to take the items out of the cupboard, however, he was unable to remember the items and the sequence in which I took them out of the cupboard. 

Reflecting on this particular clip was a learning curve for me. I came to the conclusion that the time between activities was too long and I had given Nick too many items to remember. I also realised that he had no understanding of tea and sugar. He didn't know the words 'canister' or   'silver'. He was not aware of the difference between the spoons in the drawer. 

Not to be too harsh on myself, I do think that we, as a family, need to be more mindful of including Nick in more day to day activities! To our detriment, we have over indulged our special needs child; we have pandered to his whims because of his disability. His needs are high; however, he has proven to us that he is capable of so much more. We have to raise our expectations and guide him to succeed.

Moving right along......

The next time I introduced this activity to Nick, I made sure to use only two items and to spotlight the pattern on my cup. I was also mindful about slowing down and giving Nick time to observe, think and remember! 

Nick was relaxed and attentive. Our interaction was a positive experience.......... but, would he remember what to do in one hour's time?

I also wanted to see if Nick could retrieve from his memory the information about my cup, therefore, I snuck in a little curve ball of my own! I chose a brightly coloured striped cup and placed it next to my blue flower cup. Nick would see the striped cup first!

Viola, how good was that? :)

You can see at the beginning of the clip that Nick wasn't keen on participating ~ he asked me for the computer and then for the car. However, he quickly slotted into the pattern of retrieving the items AND check... he took out the blue flower cup!!!! I made sure to spotlight that success!

By making a few changes and simplifying our objective, we achieved success. That is a great feeling! The next time I do this activity with Nick, I can add a little challenge. Perhaps I will add an extra item for him to remember. Maybe I will introduce a different pattern of engagement. The possibilities are endless.

I think it is important to remember that I am not training Nick on how to achieve a skill. I am purposely providing him with opportunities and giving him the time to process information, think about that information and then decide on his next course of action. I am not telling him what to do, I am inviting him to respond. I am challenging him to become a dynamic thinker.