As part of the RDI process I regularly journal about my interactions with Nick. Writing down my thoughts and observations keeps me focused and motivated. My journal entries are also accessible to our RDI consultant. She reads each post and then gives me feedback.
The following is my journal entry for yesterday!!
Me: I planned to make some playdough this afternoon and decided to include Nick in the process. I am not going to write about our experience as the video tells its own story. I also didn't write up a plan.... we just went with the flow! We have NEVER made playdough together, so this is a brand new experience for us both!! What a long way we have come..... I recall the early days when Nick wouldn't get off the couch and he disliked any form of interaction. We spent a good 10 minutes (without stress from Nick) making playdough, however, I have managed to shorten the video clip to around 3 minutes!!
Consultant: That was incredible! The attention and interest was amazing...Nick was loving being a part of the interaction and he was your APPRENTICE!! Loving it!! Oh and you may not know it but the fact that when something dropped and he picked it up, that is also an objective as he did not show stress and he was part of the solution! Definitely want to work on his motor planning through some RDI activities..I think his stirring just needs a bit of extra support and it will be sure to improve! SO many more doors are opening up for us to work on obstacles now that his resilience is improving every week!!!!!!!!!! Kathy
It is not often that I add video footage to my journal, however, I thought this clip was exceptional and well worth sharing with Kathy. As for me.... I am *thrilled* with our progress!
I took Nick and the puppy down to the beach front this afternoon. My initial plan was to go for a short walk, however, for some strange reason my car pulled into a parking space across the road from a favourite cafe. I am forever amazed by my car, she seems to have a mind of her own.... which is actually a good thing! There have been times that I have pulled into my driveway and have no recollection of the route I have taken to get home!! Best I start paying more attention!
There we sat at one of the pavement tables, taking in the sights with the puppy at our feet. Well, I was the one taking in the sights whilst nonchalantly sipping on one of the best cappuccinos in Durban. Nick sat there with big sorrowful eyes and continually asked for my phone! Every now and then I would shake my head for "no" and make some declarative comment to see if he would react about the dog, the people, the surroundings... anything!!! Sigh, he remained stubborn and continued to look at me with those sad sad eyes! I held off for quite a while and Nick coped just fine. I passed the phone over to him when some familiar faces stopped by to say "hi".
Although I live in a large city, our community is relatively small, therefore I always bump into someone I know! Hence the reason for this blog post.....
I am getting to my point in a roundabout way!!!!
I realised many years ago that if and when I take Nick out into the community we are bound to attract some attention. I even organised for my sister to collect me some autism awareness cards from the National Autistic Society in the United Kingdom. You see, I was fully prepared for attack.... if anyone gave me grief, I was just going to whip out a card and silently hand it to the offending person and then I was going to walk away. Yep, I had it all planned!
I still have those cards and I have not handed out even one of them! I can actually count on one hand the amount of times that a member of the public has been deliberately unkind. It was hurtful, it made us angry and we may have made a smart remark..... I can also remember each incident. But, that was it!
I have learned that it is my attitude that makes the difference! The way I am with my child; and the way in which I interact with the people I come into contact with has prevented any unwanted remarks. I smile a LOT. I shrug my shoulders. I laugh with my boy. I say "my son has special needs". I say "my son is autistic". I say "my son has autism". I say "my son cannot speak". If I see people staring a lot.... I must admit, I do give them a bit of a *look*.
Generally people are kind and understanding. They may think my son is rather odd, however, that is their problem, not mine! Perhaps my skin has got tougher over the years, who knows!
Being friendly, open and positive has made my life a lot easier. I really do think that having a good attitude helps the general public to be more accepting of children and adults with special needs. Perhaps it also makes them realise that they need to be more mindful of that child/adult who is making a strange noise. I also think that the more I take Nick out into the community... the more the community will get to know him and accept him without judgement.
I remember going to the supermarket a year or so ago... Nick was pushing the trolley and he mistakenly pushed it too hard and it caught the ankles of a woman in front of him. She spun around and made an extremely cutting remark. I quietly said "I am so sorry, my son has special needs". The poor woman was absolutely mortified and couldn't apologize enough. I would rather that the woman went away thinking to herself that she must be more mindful; rather than her go away muttering and moaning about that special needs mother throwing a hissy fit!
Back to the beach...
The familiar faces that stopped by my table had a good old stare, but so what...... As I was leaving the cafe I bumped into another acquaintance; and we spoke for a little bit about Nick. She also waved to Nick... I like that, I like that people acknowledge my son.
I also like my lovely lurking friends who read my blog..... Thank you xx
I read a lot.... and I am not talking chick lit here! Each time I log onto the internet I am bombarded with articles, blogs, books, videos, links and groups that all revolve around autism. Sure, I can choose not to log on, however, I enjoy keeping up to date on what is happening in the big wide world.
There really is some interesting stuff to be found and I am not one to bury my head in the sand and say 'she'll be right Jack!". Although to be honest, I am a bit of a *skim reader*. I just don't have the time to delve deeply into each and every article and YouTube clip!
I want to know the latest autism news and read the reviews. It is important to me to read blogs that give a personal account of living with autism. I want to be involved in groups and to play a part if and when I feel like it. I want to hear about the happy, sad, funny and bad stuff out there! My three sisters will tell you that I am just plain nosey!! :-)
I have learnt a few things over the years!
There will always be division within the autism community. We don't stand alone here. No matter who we are, what we are, what we like or what we believe in, there will always be someone who disagrees with what we favour! This is to be found within any community. I call it *life*.
It is easier to sit on the fence (on the internet!).
My journey is MY journey.
My friend's journey is HER journey!
Don't judge another person's journey, even if what they are doing makes me shake my head in disbelief!
Think before reacting (this is taking me a while!!). Reminder to self: It is easier to sit on the fence and keep my mouth shut.
Be kind and understanding.
Don't bash anyone on the internet. If I don't like what they say, I keep my mouth shut! The feelings of angst are really not worth it!
Save the debates and heavy discussions for people that you can sit down with, face to face. It is extremely difficult to *talk* without being able to see and read the non verbal language that is being expressed!
Only share the nitty gritty stuff with people that you really trust! (Yes, you know who you are!!).
Do not diss another person's blog. If it is not for me, I will no longer follow it!
Support each other.... on the internet, in our community, country, town, suburb or next door!
I could go on and on. BUT.... I have bought a new book that is being talked about over the net and it is quite the hot topic at the moment!
To acknowledge Nick's thirteenth birthday, I spent hours upon hours trawling through photographs. It was a huge trip down memory lane and not all of it was good! As much as I love each photo that I chose for Nick's birthday blog post, I do find that the pictures miss the essence of Nick. Each picture portrays a happy, without a care in the world, boy. What you don't know is the story behind each picture..... Perhaps you are unaware that Nick is severely challenged. He does not speak, although he can communicate. He cannot write but he is learning to read. He is unable to ride a tricycle but he can find a video clip on my phone without any trouble at all. Over the years his anxiety has prevented us from leading a normal family life. In fact it still does! However, we have come to terms with our way of life and we choose to move forward. I have also been going through my video archives (do you think that all of this reminiscing is a middle age thing?!!). Anyhow... I found some video footage of Nick that was taken in May 2007. It was a big *wow* for me because I can see how far my boy has come since then. Prior to the first video clip below, we had been following a typical path. Nick was having regular Speech and Language Therapy, Occupational Therapy, Physiotherapy and ABA. He attended school with a facilitator and he also had a private tutor in the afternoons. Oh, and don't forget the drugs (for him and me!) Yep, it all cost a pretty penny! What was I doing while all of this was going on? Well, my major role was to be Nick's carer and also his taxi driver! Believe me, it was not a lot of fun! Eventually I came to realise that something wasn't quite right with this picture. Nick was having loads of therapy AND I wasn't involved. In fact, I couldn't do a darn thing with him, except read him stories! A few months before the first video clip was taken (May 2007), I started hearing talk of RDI and it rang a few bells for me! To cut a very long story short, we decided to have Nick assessed by an RDI consultant. The following video clip is part of that assessment. I chose this clip to show you (in all of its negativity!) because this is how Nick was back then. If you think he was stressed here, you should see how he was for me! Not good!!!
After the initial assessment, a plan was put in place for us. Sadly, after a few months, we discontinued with our consultant and the Connections Centre.... this was back in the days when we didn't have a good internet service blah blah blah.... Any video footage that we took would have to be burnt to a DVD and then *posted* by snail mail to the USA! That didn't work for us! Therefore, we just bumbled along with what we knew and I kept up to date with my reading. In 2010, we decided that the time was right to re-establish our relationship with RDI. The following two activities were filmed as part of our assessment for an RDI consultant in the USA. By the time I got to take this next bit of footage (October 2010), we were doing well with our *non verbal* communication. Nick understood that he needed to reference me for information. We could go to the supermarket and easily communicate to each other from afar. However, we still weren't quite on the right track. You can see from this clip that Nick still gets very anxious when he feels under pressure. To be honest, I also wasn't sure what I was doing! Although I was aware of using declarative language, I spent too much time being *non verbal*! I wasn't able to *get into the groove* of being declarative! :-)
Both clips show Nick's anxiety and his desire to leave. Both clips show how I am expecting Nick to *read my mind* and to know what to do. Which of course he couldn't do! The clips also show that I am unsure on how to define our roles and set up regulatory patterns. Each activity went on for too long and frankly, there isn't really any real engagement between us! I could analyse both clips until the cows come home.... but this post is getting a bit long and I still have a way to go!!! :)
This final video clip was taken a couple of weeks ago. It is not the best clip that I have of us interacting; however, I do think that it is a good example of my style of parenting and Nick's involvement in what we are doing. Nick's role was to stir the sauce at the same time as I poured the milk. This is quite a difficult concept for him so I took it slowly. Due to his motor planning difficulties he also battles to stir! I also want to quickly spotlight a few time codes for the video clip... just to give you an idea of what stands out for me!
0.15: Nick went to pick up the milk. I thought this was important to note because it shows that he is aware of the pattern and that he realises that he has a role in the interaction!
From 0.38: Nick went a bit vague.... so I paused and waited for him! Important to make note of this because it showed that I was taking my time and just waiting for Nick to reconnect.
2.00: I spotlighted that Nick was mixing and I was pouring... I was making a point of reminding Nick what we were doing.... highlighting our roles!
2.11: Nick indicated that he wanted to leave but I had already decided that I was going to add a little challenge... I wanted him to place the jug in the microwave!
2.29: I went to the microwave and waited..... AND Nick picked up the jug and put it into the microwave!! YAY :-)
The activities I do with Nick are always about engaging with each other. The activity is the *prop* which lends itself to creating roles, patterns and opportunities for interaction. We take tiny steps and as Nick becomes competent and confident with something new... then we take one more tiny step!
Yesterday, I had to take Nick to puppy training with me. We rocked up to a park that he has never been to before. His role was to carry a camp chair down a long path and then a steep hill. I got caught up getting the dog out of the car and Nick went ahead of me. I knew that I couldn't catch up with him, so I watched to see what happened next. He walked towards the dog trainer, saw a log.. put down the chair and sat on the log. There was no anxiety to be seen. He was relaxed and totally blasé about the whole experience! HUGE!
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 *slowmyself 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.
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!!!