Curveballs and cake!

I took my Mum and Nick to visit one of my favourite coffee haunts, Churchill House.  Their space is incredibly tranquil and it is very easy to linger for an age over a lovely cappuccino and an exceptionally delicious Bee Sting (small cake).

Upon arrival we found a little spot in their garden and promptly ordered drinks and fattening stuff. Nick settled himself down and requested a milkshake. To our dismay, the waiter came back to inform us that the Bee Stings were still in the oven and that they didn't have any milkshakes! Eeek.

What to do? What to do?

I deliberated over our dilemma for a minute and then decided that we could walk to the local mall and spend some time wandering around. Nick took it all in his stride, although I could sense that he wasn't keen to go *window shopping* again! Typical boy. I also bought him a flavoured milk to drink back at Churchill's.

Anyway, half an hour passed and we headed back, lured by the smell of coffee and the anticipation of devouring a freshly baked Bee Sting. We chose a different table in the garden, placed our order and requested a glass for Nick's milk. The teen plonked himself down and asked for the iPad.

I have a mini iPad that I carry around with me. It has communication apps (which we very rarely use ~ blush), an app that we use ALL the time (Abitalk) and a ton of music. I handed the iPad over without any qualms. Nick stimmed away on his music and gulped down his milk (a new taste ~ woohoo).

I was so impressed with Nick's ability to cope with a lot of variation/change without any warning. A far cry from a few years ago. To be honest with you, if he needs to have some escapism time with the iPad after new experiences and challenges, then so be it! He gets such a kick out of listening to music and my brain switches off to the fact that I am hearing the same old pop song AGAIN!

~*~

RDI ~ reflections on episodic memory!

My boy has always been an incredibly anxious child. It is not uncommon for him to go into *fight or flight* mode when introduced to new experiences, concepts and anything else to do with LIFE! I am very aware that he would be extremely happy if he could spend the rest of his days glued to some electronic device. No doubt he would come up for air, although only when hungry and/or tired. Sadly for him, I am not on the same wavelength! 


As Nick's mum, it is my role to help guide my boy and show him that life isn't all big, bad and scary! New experiences can be fun. Learning new things doesn't have to be stressful. Going out into the community can be a positive and interesting exercise.


What I have discovered with Nick is that I have to take the *slow and gentle* approach. One of the ways in which I go about this is by working on his episodic memory (RDI).


I have learned over the years, that in order for my son to move forward, I need to help create a memory bank of positive moments for him. Moments that he can remember, learn from and then retrieve when needed. I want him to remember a particular moment and recall how it made him feel..... 


* Did he feel competent?
* Did he learn from that experience?
* Is he capable of moving one step forward from the experience?

To assist in building up Nick's episodic memory, I help him by introducing and guiding him through different experiences. I revisit old memories and build on to them. I also introduce new concepts and activities. At all times I need to be very aware and extremely mindful about my guiding. I must know exactly how far I can move Nick forward (that one step!) to ensure that what we are doing together is a positive learning experience. I am learning to take him to his level of competence and then one step further ~ believe me, it has been hard to rein myself in and it has been quite a journey to *slow myself down*!!


Please find below, three examples. One in which Nick solved a problem all by himself. Another where I am trying to turn an unhappy experience into a positive memory. Finally, an activity in which I am building up a memory bank to help Nick feel competent and for him to learn further.


I happened to see this one out of the corner of my eye and it was a big wow for me! The puppy was bothering Nick as he is wont to do! I saw Nick scanning the room and then go over to the puppy's bed. He picked up a toy, walked over to the puppy and gave him the toy. Voilà, the puppy then left Nick alone. Since that day, I often see Nick giving the puppy a toy when he wants him to go away! Nick has stored the memory of creating a solution and the solution was successful, hence it is now a regular pattern. Nick has solved the problem without assistance and has created his own episodic memory of the event.


Taking Nick for a haircut is certainly not a good example of a positive memory!! It has been ingrained into his episodic memory that having a haircut is an unpleasant experience!! However, over the years he has come to know what to expect. I have taken him slowly through the process and with a big smiley face.... Now Nick is happy to get out of the car (he used to cry when driving into the car park!). He is comfortable going into the Barber shop, sitting in the chair etc. He knows that he can choose the scissors or clippers. He is comfortable with the process until the barber starts cutting! (Then I bring out the iPad... when needs must and all that! )  


Recently I started including Nick in one of my daily chores activities... making cheese sauce! My first goal was for him to stay with me for a short while. He was there to observe part of the process and to take a little turn stirring the sauce. We created an episodic memory in which Nick didn't feel any pressure to participate. He soon realised that his role was to stir the sauce, although because it was for only a few seconds, he understood that I wasn't telling him what to do and expecting him to perform. He was happy to participate. We have now moved on from those early days (around three weeks ago!) and Nick is now taking on various roles with ease. He is comfortable with the experience and he can recall what he has learned so far... AND he trusts that I am not going to move him too far out of his comfort zone. Again, I am also aware of how far I can nudge him further to make our activity a learning experience and a positive interaction, thus building up a positive episodic memory.


To conclude... 


Has it worked for us? Yes, without a doubt! I have gone from having a child who refused to do anything with me, to a child who is comfortable trying new things with me! Gone are the days when he would sit on the couch shaking his head frantically for "no" and continually making the sign for "finished". Let's be real though! My son is extremely challenged and progress is slow ~ but I am OK with that!


Slowly but surely we move on..........

Disclaimer:  This post is my interpretation of episodic memory... I may be way off the mark!!!

Joyful January

I am starting out the new year in celebration of my son Nick.

What is there to rejoice about you may ask! Am I glad that I have a child with an intellectual disability? Am I delighted that he has autism/is autistic? Am I thrilled that I don't have the *freedom* of life like that of my friends? Of course I am heart sore that Nick will not get to experience life like his big brother. There is no doubt that I am concerned about his future and what is going to happen to him when I pop my clogs (so to speak!). Yes, I am terribly sad that we are a dysfunctional family and that there are times when Nick is excluded from family activities......

Over the years I have had a few choices;
1. Become an absolute misery and let my situation rule the rest of my life.
2. Become obsessed with autism to the detriment of my family.
3. Bore everyone to tears about the woes of having a child with special needs.
4. Pick myself up off the floor and keep moving.
5. Take on board my son's disability and all that it entails.
6. Become informed and also inform.
7. Accept my son for who he is and embrace his individuality.
8. Provide the right input to insure that he continues to progress.
9. Pull this child of mine into my arms and love him, no matter what.......

I choose to celebrate my son.

I celebrate the amusing stuff.

Nick has become very tactile and he has this need to touch my face and my arms. This is all very well, until he starts pulling on my jowls or flapping the underside of an arm!! On many a shopping trip, Nick will come to me and then pull in Thomas and Allan for a family hug. No doubt we have had some strange looks, although I prefer to remember the smiles! I enjoy how he is the typical boy when it comes to Bottom Burps (love Purple Ronnie!). He takes great delight in highlighting what he is about to do ~ how can you not smile at that!! It gives me joy to watch him initiate a chasing or throwing game with his brother. I love how Nick starts making his *humming* noise and then waits to see who will reciprocate! :-) 

I celebrate his little patterns.

Nick certainly shows signs of OCD! In fact, a few years ago, his need for repetitive patterns really hampered his progress with learning and living. This obsessive need has decreased, or perhaps, I have become accustomed to these odd quirky little patterns that are part of Nick. We have had the *drop to one knee* routine, the *go back and check the door* routine (oh, hang on, I also do that!!!!). This week it is the *close the loo door, run the fingers over the light switch a few times* routine. Last week, it was *have a sip of juice and then hold the container to the ear* routine. My word, we have had some funny ones! :-)

I celebrate his progress.

Nick continues to surprise me in all aspects of his development. A year ago, he was a stubborn mule, refusing to get off the couch and quite adamant that he was NOT going to engage with me! Today, he will sit on that same couch, look at me with a cheeky smile on his face, and then leap to his feet to come and join me! We have a lot of big words in our vocabulary; relationship, resilience, competence, flexibility, objectives, evaluation, personal experience memories, spotlight, reference, mastered, communication (and non verbal), perspectives, engagement, regulate, pacing........ and the list goes on... He is doing great, WE are doing great! :-)

I celebrate his nature.

Nick is a gentle soul. He is not an aggressive child. Sure, on occasion there will be a little bit of self injurious behaviour, however, this is generally under extreme stress or anger! I haven't seen much of this over the past year. He can be cross and shake his head for no. He can stamp his foot. He will wave goodbye when he doesn't want anyone around. He will sign "finished" if he has had enough. If we are doing something that he isn't keen on (long walks!) and he becomes *flat* and unresponsive, I start singing to him! His favourite jingle at the moment is Bananas in Pajamas and I only know three lines! This perks him up and gets him smiling! Nick is an uncomplicated chap and has ambitions of being a couch potato. Sadly for Nick, my ambitions for him are a little higher! :-)

Speaking of which, I need to stop procrastinating and get back on track with our latest objective...... It is all about Perspective! 

I celebrate Nick and I know that 2012 is going to be a very good year for us

~*~