Thursday, 21 November 2013

Double Edged Swords

Stardust has been a bit dis-connected for the last week, he has been so immersed in his electronic devices I haven’t felt a closeness to him. Tonight we had to have a chit and a chat.  I am writing this and as I do I am reflecting, maybe it is me that has been dis-connected, maybe it is more about how I have been than him but it is always a hard one to work out.  One of us has been distant in some way and for some reason.....

Stardust has a brain that fizzes and whizzes, it sees all sorts of amazing patterns in all sorts of ways, he notices how grids on the pavement line up, patterns in walls merge together, how we arrange street signs at certain heights and all sorts of things that would pass me by in a blink of an eye.  He has an eye for detail and if something changes places he is a super star detective.  The first school Stardust was at he spent most of his life in the head teachers office; he liked it in there as she chatted to him and spoke about lots of different things that interested him.   One day she told me that he had been brought in ‘again’ this time because he had thrown a jigsaw out of a first floor window..... He had walked into the room with his teaching assistant and literally fallen to the floor kicking and screaming.  They were all very confused as to why this would happen at that precise moment but all was revealed and Stardust eventually told them that a book had been moved from one side of the room to another.  He was so disturbed by this change in his surroundings that he was unable to do anything for a good hour.  This eye for detail is amazing on one hand but on the other it is so debilitating.  I always say  his strengths are also massive weaknesses (maybe that is true of us all)...

Stardust has had some really vivid and realistic nightmares over the last fortnight and he has been very upset and disturbed by them.  He literally became mute for two long days, one day he said not a word for 6 hours, just mumbles and hand gestures.  He has opened up to us now; I think when he had worked out how to explain.  Stardust finds describing something very tricky and when he does eventually process information and work out how to re tell something, he has to have the precise language or he becomes very agitated and annoyed with himself.  It took about three or four days for him to tell us and the dreams did sound very scary...vortexes and monsters with cloaks and daggers dragging him away from his family.  Not very nice at all.  He watches YouTube videos and plays Minecraft and I think these two things combined may have contributed to his brain morphing and altering stuff about.  An amazing concise and particular imagination but very debilitating.

Today he was in his 1:1 science session and he really wasn’t focussed, he spent most of the session spinning on a chair and telling us to be quiet.  It was a bit of a shame as there were some very interesting experiments and he was just not in the right place to be doing them.  We agreed to finish up a bit early and I popped his shoes back on (he always takes them off!) he sat for a minute and then (in his words) he said he felt very very sad.  He told us he had been glancing at the images on the wall (they are of all sorts of different animals – prehistoric to the present day) and that he could not comprehend the enormity of the dinosaurs, how they could have lived in our world and what they were actually doing here.  He went on to say that the ice age was the most disturbing time for him and even though it was fairly recent at 6000 or so years ago, imagine he said just imagine for one millisecond that you were one of those poor helpless cute furry animals frozen in time, just wiped out. He said he was feeling very worried for them and that life really wasn’t fair. 

Stardust is very clear about his feelings, he does wear his heart on his sleeve, it can make him vulnerable, although most people cannot see this vulnerability.  I can see it because I listen to him very carefully, I really do. 

Some of the things I have written about here really go against some of the areas that people say about individuals on the autistic spectrum.  Stardust has empathy, he has sympathy, he has imagination and he cares greatly about people and animals. 

In a nutshell when you look at that list they are all endearing qualities.  It is the unique insight and level of understanding and how this affects him that is the nub of the issue.  This week has been tough I can’t deny it.  I feel a bit down beat but you know things are fine...I gave Stardust a massage tonight and he told me he loved me so much.  It is always about taking the rough with the smooth, moving on and adapting each day.   Here is to some smooth sailing - maybe a change is afoot...time will tell.




  1. It is wonderful how he puts so much thought into what is going on around him, past and present. How lovely that he can articulate his thoughts... even if sometimes it takes a long time to come out. Is he still bothered by change? Nick used to be, however, is no longer. Have a 'smooth' weekend. x

  2. Thank you for your comment
    He is a lot more flexible about change, I guess it bothers him when he is expecting something to be a certain way and it has altered, so if we have visited somewhere and he is enjoyed an aspect and that has disappeared the next time we go it can be tricky. I think that is similar for all of us though his responses are somewhat more challenging. At home we are constantly changing things about to try and help with this, I don't think sticking to a tight structure is helpful for people that are inflexible.