Saturday, 14 December 2013
Tuesday, 26 November 2013
Thursday, 21 November 2013
Friday, 15 November 2013
I sometimes get a bit weighed down with people saying how lucky Stardust is. Lucky why? There is nothing lucky about his situation. I feel like shouting, hollering and bawling from the rooftops when people say that, I find it offensive. They don’t understand, they really don’t get it, his life has been full blown toughness. He has fought more than most of us will in a lifetime, in a system that really had no time or inclination to find him. He has had to work on building up a resilience that would out shine the sun because he knows how much he hurts and upsets people when he becomes aggressive. To bounce back from that and keep going is incredible. He cannot read and he cannot write yet he keeps trying, he keeps trying because he desperately wants to know. Stardust has intrinsic motivation for sure, he is riding the wave. He helped me find my passion – I found it because of him. I am lucky not Stardust.
This week has been an eye opener for me. Stardust seems to be moving quickly, his problem solving skills have been flying out of him at the supersonic speed of light. Reassured and content that we are 100% definitely doing the right thing.
I know to many these things sound so unimportant and pretty much insignificant. Nothing is ever a given with Stardust so these things are really important and really significant. They show leaps and bounds of progress. They help us to confirm that his brain is starting to work things out and they really show us all that Stardust always does the best he can - this we knew but to have affirmation of it is reassuring. I am feeling pretty pleased with these big steps he has made this week. Stardust responds to the way we work with him because: we respect him and trust him to do the right thing. I know this is because we do not sanction, we do not reward and this gives him the opportunity to really work things through. Removing items, taking children out of situations without giving them a chance to suss it out for themselves is unhelpful at best. How will internal coping ever occur? It doesn’t – it is controlled coping and this is never good. I am looking miles into the future and helping him to lay down foundations for success. We will keep going, we will get there, I know we will.
Wednesday, 6 November 2013
Stardust can become extremely anxious in certain situations and unfortunately this means he can lash out aggressively. This has been problematic for him over the years in a number of different ways. We have stories of situations which have made me and I am sure him, feel like digging holes and hiding but life goes on. I am here to help Stardust gain tools to manage his frustrations, like an extension of his body if you like. Aggression is the most debilitating part of his make-up and one that causes me pain and worry on a daily basis.
Friday, 1 November 2013
- a magical or charismatic quality or feeling (that is why the name was chosen)
Stardust has a brother, lets call him Resolute (definition: admirably purposeful, determined, and unwavering). He is 14, he also has a diagnosis of Asperger's syndrome with oppositional defiance disorder and high anxiety (this basically means he will not agree with anyone about anything without holding swords up until dawn). It can be very tiring for him and everyone around. When someone is adamant they are correct believe me they will not give up. Resolute was very keen on getting a diagnosis and he had a thorough assessment done earlier this year - we travelled to The Tavistock Clinic in London. He has managed to keep himself focussed in school to an extent and out and about, but at home we have had to endure very difficult moments. Times when anxiety has struck him so hard. This has caused lots of struggles.
He was relieved by the 'label' he was given as he has been insistent for a while that he has similar challenges to Stardust. I am a bit funny about naming a set of behaviours, it does play havoc in my head, but I do have to hold my hands up and say that it has helped Resolute to know what's going on with him. He literally breathed a sigh of relief after he found out. I saw a weight lifting from his shoulders and since that day he has had a shift in behaviour - still lots to work on but not so ultra challenging. He decided after he got his diagnosis that he didn't want to stay at the school he was at. Too academic, too pushy and nothing like the philosophy we have at home. We hunted about high and low and we discussed about home schooling, but he was keen to move on to another setting and was sure we would find one. We did, but it was all the way down south. It is a small independent school in the countryside and he loves it. The teachers are respectful, the pupils are all kind to each other and he has a good laugh. He isn't spending his days competing about who has the latest gadgets, he is computer programming and playing FIFA and doing lots of things teenage boys should be doing. The most important thing is that he is happy there.
Stardust sees Resolute a lot - we try and make sure we spend at least every third weekend together and he is home for all the holidays so it really isn't as bad as one may imagine. Things soon slip back to normal after a few minutes, it is like we have never been apart.
I don't spend a lot of time thinking about the boys having their difficulties. It can be too overwhelming and I think at times unhelpful (maybe depressing). We take each day at a time and slow everything down to the speed of a snail. The slower and calmer I can be; the more productive and happy they are. I do so much listening, not to words but to everything. I observe like an owl. I know the boys inside out and back to front and they know me too.
They can feel emotions across miles - they know my mood is going to switch before I do. They can feel a baby crying and the hunger inside its belly. They can feel anger from people conversing in the street, and often believe it is directed at them. My two boys have an amazing ability to pick up on individuals that are less than genuine. This can cause problems, but sometimes it can be helpful. They have if you like a sixth emotional sense and they don't know what to do with it. It causes crazy reactions inside of them and this is when they can become disengaged, agitated, angry and aggressive. To say a person on the autistic spectrum has no empathy to me is like saying fish can't swim. They have gallons of the stuff, so much that it hurts.
Tuesday, 29 October 2013
So today I decided to start a blog properly - I keep thinking I need to do one and never get round to it but today I have.....This is really to introduce us and what we are about.
Stardust is 9 and he has a diagnosis of Asperger's Syndrome, Sensory Integration Disorder and Dyslexia. I have a bit of a battle in my brain about labels as I find them somewhat of an irrelevance. I think looking at an individual and working out the way they process information is kind of the crux of things. Labels can help in some ways, maybe to access support and with financial bits and bobs but not really for our philosophy. Stardust is a gem, he is like those shiny stars you see but never reach. I am lucky because I have reached him. This is because I have let him be himself.
He doesn't go to school, he is educated at home and he has a team of adults that work alongside him. He has therapists a teacher and a teaching assistant. Stardust has only been to school for two years of his 'official school life' he didn't like it and he spent a lot of his time stressed out and very sad and withdrawn. He was in a small independent school to start with and then moved to a 'special' school. I think he would argue that there was nothing special about it. Neither of these places really understood life from his perspective or if they did they didn't trust him to do the right thing. He came home one day nearly two years ago and said he couldn't go to school anymore, he said that he had quite had enough of the carry on. We listened to him and we decided he was right.
The next few months were very hard.....
We spent a long time just being - just doing what we could manage to do. Sometimes this was as simple as getting up and eating some breakfast, sometimes it was a little more, like playing a game together. As time went by we could do a little bit more and we started doing stuff like popping to the shops for just one thing, sometimes this was so hard we didn't make it through the shop door. We took all the time we needed. Some days were much better than others. The bad days outweighed the good to start with. Stardust was very sad and still very stressed, so he could become aggressive and angry without warning, he could withdraw into himself and he could stop eating for days at a time. He would sometimes hurt members of the public and attack himself or members of his family and this would be very hard for everyone involved. The thing was it was going to be ok and Stardust knew this because he knew that we were doing the right thing. He knew that even though we were making baby steps we were going to move mountains.
After about 7 months of leaving school Stardust started spending time with other adults, not just me - he loved it and we started to do bits of 'work' with him. He loved that too. He loved it so much he started asking to do more. He was working so hard and doing so much we had to start preparing and planning loads of things. This has continued. He works hard, not just at 'educational work' but also in his therapy and just on a general day to day basis.
I have so many stories to share about how we have got to be where we are today - the approaches that have been implemented, the communication that we use and how Stardust has continued with his strength and courage to become the empathic, sensitive and caring person he is. We still have times when the world is overwhelming and something triggers an intense response. These are things we are working on all the time.
Follow our blog and come join us on the path we travel .... it's a tough rocky road but we are getting there. If you are lucky you might reach Stardust too and see life through the eyes of a genius.