I managed to angle it today so that I had a bit of time to myself…well, with just the baby anyway. She’s like a permanent attachment to the side of my body so I include time with just her as time “alone.”Elsa is at orchestra every day this week and today Jude went to a summer camp based at his school. He hasn’t done one of these for a few years as last time he went (I think he was about 7), I found out he had literally sat and played with cars on a mat ALL day long. No one had attempted to distract him with other activities, they’d just assumed he was happy like that. I was mortified no-one had realised that he’d just gone into himself in a way only autistic and severely disabled children are able to do. But anyway, I thought we’d give it another go so today from 10am-3pm I was Jude-free. Amazing how fast 5 hours can whizz by!
I think he had fun. It’s hard to tell with Jude really as his idea of a good day is one where he has been given a cake or sweets or has been allowed to stare at constant episodes of Topsy and Tim whilst lining up building blocks. In fact, if you ask Jude if he’s had a good day, he’ll automatically say yes. I wasn’t overly confident at pick up time when the lady who went to collect Jude for me said “I think he’s had good day.” Awesome. He’s going back on Friday so we’ll see, I’ll reserve judgement for then. I know there is only so much they can do in terms of budget and content and they do try to theme each day but it just always seems so basic. Am I a summer camp snob?! Perhaps. I won’t deny that one.
So what do I mean when I say Jude “goes into himself?” Have you ever seen someone concentrate on a game of chess so hard that they look like their mind has become its own being and their body is subservient to what is going on? They are focusing so hard that they are no longer looking with their eyes, just looking within their brain to work out that next move. Jude has almost that look when he’s left to his own devices with some building blocks/random objects and a table he can kneel up at, at eye level. He will line up the blocks and move them round in some random manner (random to us but clearly not to Jude.) I don’t know for a fact how long he could do this but when he’s in the right mood I would guess he could do this for at least an hour. It’s as if he needs to do it to feel calm, content and relaxed. Elsa will just lie on the couch and watch tv to chill out, Jude will line up blocks!
It’s called stimming in the world of autism which stands for self-stimulatory behaviour. This web page below gives a good, detailed explanation of what it all means.
Jude didn’t do it when he was younger but definitely over the last few years I have seen a vast increase in his variety of stims as well as his need to do them. Apart from playing with building blocks in his funny little way, Jude also asks the same questions over and over again. I’m not sure if this is a stim but reading up on it, I would suggest it probably is. He seems to have certain sentences and questions for certain people and he’ll ask them as soon as he sees that particular person.
Similarly, he makes noises. Not all the time and actually, they have lessened a great deal to the point where I think Jude now uses them purposefully as a way of getting attention. When he is with certain people, he never makes his noises but with others, it’s almost immediate. Habit like.
I read an article on the BBC website about stimming (http://www.bbc.co.uk/news/blogs-ouch-22771894) and found the following quote from a lady on the autistic spectrum herself, very interesting: “[Stopping stims is] a bit like ‘teaching’ someone who is blind not to feel things in a room to find out where they are because we don’t like them putting their arms and hands out to do so.
“It has a purpose. Stopping it in order to make others feel better seems bizarre to me.”
I feel really bad as I often try and stop Jude from making these noises as to me, they seem bizarre and unnecessary. I guess from Jude’s point of view, he is just trying to make himself feel comfortable. Why do we feel the need to make disabled children something they are not just in order to look like everyone else?
I feel bad now, I promise give him more freedom to feel comfortable.
Nothing much else to report today…still no news from the non-Social Worker so I have emailed him AGAIN and more importantly, I haven’t found a Naturopath as of yet but have asked a few people, who do know people in this industry, for some name suggestions.
I’ll leave you with this picture of Jude with one of his wonderful new sensory toys. He still loves them so much so I am on the look out for things to add to the collection. A x