Making changes!

This post is for a friend of mine who has the dearest little boy who just happens to be autistic AND he hates change of any sort.

I may irritate a few people with this post, especially the people who advocate keeping.... 


Everything. The. Same. 


We know that children and adults on the spectrum don't like change. We know that there is comfort in rigid patterns. We know that in order to prevent meltdowns it is safer to...


Keep. Everything. The. Same.


We know that it is scary to rock the boat and life is calmer if we... 


Keep. Everything. The. Same.


But, guess what? Life is not static. Life is about change. Life is dynamic. Life is about the unexpected.


I don't think we are doing our children any favours if we...


Keep. Everything. The. Same.


Many years back, Nick was the poster boy for extremely rigid patterns and sheer hatred of change. Tables were cleared with the swipe of an arm. Distressed wails were to be heard if I drove a different route. We relied on visual schedules. If there were chores do be done *outside in the big wide world*, then only one chore was possible, but it was to be done quick sticks, otherwise look out! The list of horrors is too endless to repeat. 


My friend, you say that you don't have a strict schedule at home?  Maybe not, however, I would be willing to bet that your boy has many patterns that you may not be aware of. Let's get real here. We all have our own little schedules. Some of us live by our diaries. Many of us stick to the same old routine of doing.... whatever. BUT, but...... we can adapt to any changes that may occur.  It is not a train smash for us if we are diverted from our original plan. Throw autism into the mix and we have an issue on our hands.


Look at your son's daily routine. What happens with dressing? How is he with breakfast? Does he always sit in the same seat when you drive him to school? Do you drive the same route to school? Does he always have the same lunch box, the same food, the same juice bottle, the same juice? Do you have a regular "bye bye, see you later", pattern? Look at what happens on a daily basis and analysis it. Are the patterns that you see, the same patterns more often than not? 

I really believe that our children are capable of being more adaptable/flexible. The way that we helped Nick to become so receptive to change was to introduce changes to his rigid patterns, slowly and gently, bit by tiny bit. We always made sure to have big fat reassuring smiles on our faces and we kept our voices light and calm. We may have been feeling frustrated/angry/sad etc but never, on any occasion, did we let Nick see this. He needed our reassurance when changes were made and he got it regardless of our own mood.


Whenever a change was being made, we were very mindful of taking Nick to the very edge of his competence and a whisper beyond. 


To give you an example; as mentioned previously, if there was *anything* on the table that didn't belong, then Nick would clear the table. He would get extremely distressed and go into that flight or flight mode. Well, every item would be sent flying onto the floor. Thanks to the guidance from Nick's Speech Therapist, we ensured that we kept the items on the table to a minimum and Nick associated them with what was being done. The tiny change that was made was to place a pen on the table. Needless to say, in the beginning, that pen would go flying... however, over time and with reassurance from us, it became okay to leave the pen there. That pen turned into two pens, then three, then a pen and a book..... I am sure that you get the drift!


The lunch box and all of its items remained the same for years. One day I placed Nick's chips/crisps into a packet and spotlighted the change. A week later, I wrapped the chips/crisps in some greaseproof paper and spotlighted the change. Then I changed the lunch box.......


Nick was stuck on a visual schedule at school and became extremely anxious if we didn't do what was meant to be done. Take away the schedule and he still recalled what was happening *next*. The pattern created was so rigid and so distressing for Nick if not carried out. We started changing this pattern by moving his chair to a slightly different position. If his chair was behind the table, we would place it to the right of the table... and so on and so forth. Eventually we started moving the table to different parts of the room. We then started added tiny variations to the schedule....


Our mantra was *same but different*. This concept comes from Dr Gutstein (RDI). I am not sure if it is still used today, although I think it should be, as it is a goodie! For us, *same but different* meant that we were keeping something the same but adding a small variation... and then another little variation... and then another.


We don't use visual schedules or write up social stories. Transitioning is a non issue. A great example of how flexible Nick has become is an outing that went pear shaped last week.

Our school trip had been planned. The gang were going to the beach front for a walk along the promenade and then they were going to have a picnic on a nice spot of grass overlooking the beach. There were also plans to go and dip a toe in the sea!  Well, the morning started off badly with a bit of rain and loads of ominous looking clouds overhead! Sigh, it looked like the outing was a no no. However, due to some quick thinking (and the discovery of a new playground the previous day) the gang decided to risk the rain and go on the outing BUT change the venue from the beach to the playground. 

The outing was a success (and the rain held off). Nick didn't have a problem with the new plan. He wasn't fazed in the least that he was going somewhere NEW. Good grief, the kid even sat on the roundabout.... a totally new experience.

Dear friend, just do it, try adding tiny variations. You have nothing to lose! Thank you in advance for allowing me to be so bossy!! xx


P.S: I am very aware that I need to do something about Nick's rigid food patterns!!!! ;)

RDI ~ then and now (part two)

Yesterday, while driving home from our weekly speech session, I just happened to glance over at my boy. He was sitting there quietly, listening to music and watching the world go by. For some unknown reason I felt a little heartsore and this thought came to mind.... "The biggest worry I have in my life is - what happens to Nick when I die?" Is that a BIGGIE or what?

Oh boy!


I do know that our family life has changed for the better. We are more accepting of our situation and we tend to have a positive outlook. In fact, life is pretty amazing, regardless of the fact that we have a severely autistic teenager. 


And this young man of ours just continues to progress. Isn't that great? He is 13 and still continues to make progress. 


My latest facebook status:  "A little update on Nick's vocab.... He is trying so hard to verbalise what is going on around him. He sounds out the letters of familiar short words and he has progressed from saying individual letters (i.e.) c.a.r. to blending the sounds.... c.ar. Exciting stuff." 

Over the years I have watched Nick progress; and then plateau for a long period of time. We have had times where he has been unhappy or highly anxious or switched off. This was a fairly consistent pattern until I began to really focus on RDI, roughly two years ago. I can now say without a doubt, that for the last two years, Nick has continued to move steadily forward, step by step.

Our RDI journey continues to be a learning experience for the both of us. A big part of Nick's improvement is the fact that I have been learning how to guide him effectively. I know that it seems kind of crazy... being guided on how to parent! However, it really is beneficial and I definitely need help with the fine tuning! 

I want to share two video clips. The first clip (two minutes) is from around early 2011 and the second clip (four minutes) was taken in October 2012. In order to keep this post short and sweet, I am going to let you, the reader......


Spot the difference!


Early 2011

October 2012


So, what do you think?

That biggie still weighs on my mind, however, (yes, I know this is very corny and I am sure the line comes from a movie!) we are working towards a better future....


~ * ~