Introducing Cassie

We have been so busy in our house over the last two months I haven't had time to write a blog post. There has been a big change in our house and this as an introduction to it –


Stardust has always loved animals and especially dogs.  When I heard that it was possible to get dogs trained specifically for children on the autistic spectrum I started my quest of getting him a fully trained dog. 


It was not easy by any means and a lot more complicated if the dog were to be trained to be allowed to access everywhere. Charities were not forthcoming - it seems the North of England isn't even thought about when it comes to this.  We found a charity with a section called PAWS but they didn't cut the mustard for us.


After some time my Mum decided to buy a standard poodle and we were planning to train her up ourselves.  Easier said than done....she's full of beans and loves life and training a dog to do anything is tough and extremely time consuming. 


 Last November when the poodle was one and still bouncing about like Zebedee Stardust was continuing to say he really needed a dog in his life so I started to hunt again.  As he doesn't go to school and has only a handful of peers his own age I felt having a dog around 24/7 could only be a very positive thing.  (I don't give up on something I want to achieve - even if it takes a while) Luckily for us a private company in Ireland had started training up assistance dogs for children with autism literally a week before I found them.  When I phoned they were so positive and said they could definitely sort a dog out for us no problems.  We just had to wait for them to call back to say they had one.  It didn’t take long and the week after Christmas I found out Cassie an 11 month old Golden Retriever was being trained especially for Stardust.  We sent information and video footage to them showing his behaviours and explaining how he responded in certain situations,.


In February we went to Ireland for a week to be trained up and to collect Cassie and bring her home.  It was an incredible week I was exhausted by the end of it.  I was worked pretty hard! The training that has gone into her, my goodness she can do no wrong.  One word when she has her magic jacket on and she does as you say. It is amazing.  We go to the supermarket, cafes, in museums, cinema everywhere with her.   


Cassie is a dream, she is more than that, she is like one of those dogs you don't know exist until you meet them.  She has brought this calm peaceful space over me and Stardust and I feel indestructible when I have her by my side.  I feel brave, bold and beautiful (she gets so much attention it's helping my ego too!) Stardust is happier, I guess calmer, he is more compliant and most of all he is going out and about and just doing stuff in a way 9 years old should do it.  I can't really explain it but even after two weeks she has changed our lives in a big way.  I am in love with her completely and have so much respect for her.  I think every family in the world needs a Cassie dog. 

Digging and Creating a Vortex

After Stardust came out of school just over two years ago I was concentrating mainly on getting all of his educational and therapeutic support into place.  Now we have this (just about) sorted and tribunals, lawyers, barristers and every other person have exchanged letters and agreed to some sort of sensible and realistic help for Stardust I decided that it was time that I ask for the information from his school.  Stardust has flashbacks to what happened to him during his time in school and has night terrors.  These can be really bad and he has can wake screaming and crying.  It is a nightmare and awful and I feel it is my duty to get to the bottom of what went on, to help him work through it and talk to him about incidents that occurred.

We put in a data protection request and freedom of Information request and the school did not get the information to us.  We have had to contact the Independent commissioners office and they helped to get the ball rolling.  After 12 letters we got some information, just this week.  It has been a proper shock to the system.  I have discovered that Stardust had 96 physical outbursts over a period of 10 months.  This is loads and I did not know.  I did not know it was so bad.  I don’t understand why no one talked to me as Stardust’s mum.  I would have had him out of that door long before I did. There are only a handful of incident reports but one was over the fact he put his coat on back to front.  They insisted he turned it round. He kicked off. The effort he has to put in to put a coat on independently is enormous, he has and definitely had a very weak shoulder girdle.  If they had taken time to get to know Stardust they would know that he feels sick to the bottom of his stomach when he has to co-ordinate his limbs and get dressed.  They didn’t bother to get to know him.  It is inexcusable.  He had a 1:1, the staff/pupil ratio was brilliant and it’s a Special School.....  I know that most of the staff that worked with him have children of their own.  How would they feel? what would they think?  He is a person, he is my baby and he is the one with special needs not them.  I just wish they could get the heartache that bangs inside me every time I think of them holding onto him.   They can’t and they won’t because they don’t understand.  Empathy is beyond them. I am now at a crossroads and I am going to take the right path.

I could spend my life dwelling on the incompetence, the abusive behaviour that Stardust endured or I could and I will take this conscious step right now and make sure I work through it all very quickly and put it to rest.  I have to help him do the same.  We have to get through the treacle and close the door on it all. I have no time, he has no time – I have to look after Stardust and I have to make sure that a positive comes out of this.  I have so much to give and Stardust needs me at my best.  I am going to keep writing our school business plan (it is half done) and I am going to set up something people can look at and think – ‘that’s it that’s how all children should be treated’

Eventually people and organisations are discovered for what they really are.  I think it’s called Karma....it will catch up with them eventually. 

Chill out rooms

Exactly what it says on the label – it causes chills to occur.  I have a proper issue with time out rooms, chill out spaces and anything else you might want to call them.   I have just found yet another article in Autism Eye on the abuse of chill-out rooms.  It is all so true, yet not a soul seems to do anything about it.  Stardust will tell you how much he despises the places too, he will tell you in such graphic detail that you will be moved beyond words.

We have had endured a slow moving few days and eventually just yesterday we made some headway.  After a meltdown of severe proportions Stardust opened up his heart and soul to me and cried and cried and cried.  He cried so heavily that I thought that half of Newcastle may have gone under water; we had puddles on the floor made from his tears.

.....so two years later we still have to endure the flashbacks of the so called well intentioned staff, the staff that we trusted with the care of our precious child.  The staff that insisted that Stardust was manipulating situations and purposefully being difficult, the staff that told us that Stardust should be given drugs to calm him down, the staff that were only interested in conformity and pushing their philosophy of tough love onto him.  The list could go on and it will in our heads.  Stardust is 9 years old and his life is one huge obstacle, he doesn’t need to be involved with individuals that have a limited understanding, he doesn’t need the added stress. He needs compassion, he needs guidance and he needs people around him that he can trust fully.

I would love for Alfie Kohn to pay the management at that place a visit, he would have so many words and so many clever ways of describing things that the staff would be squirming.  As it happens I could not articulate myself, I could not because my emotions were so charged.  I regret the fact I have not had my say – although it would I am sure have made little difference.  They were adamant that their way is the best and only way and we disagreed.  Stardust stood his ground and fought against it.  He knows what is right and wrong and he knew that he was being bullied by people that should have known better.

He said to me yesterday that he is one of the lucky ones, one of the children who were saved by their Mummy.  He worries about the children left behind, he says to me every now and again that he hopes they have found their voice to tell someone what is happening.   This is the sad reality of what goes through his ever thinking and tick tocking brain.  He is not lucky, he should never have been in that horrendous situation.  

Unless you are a parent who has been through this torment and experience the emotions you feel when you find out facts like ‘yes your child was guided (restrained) 12 x in 9 days’ and ‘yes he sat under a table most of the day’ you can never ever pass comment.  You cannot ever understand however hard you try.  I know because I am a very sensitive and empathic person and the emotions felt and still feel relating to this incident are like nothing else.  They fuel something you cannot describe.  It is inappropriate extortionate abuse and there is no getting away from it. 

Stardust went through this and then was literally dropped like a brick from another planet.  He was left floating in the galaxy trying to find his way through.   I have such a fabulous family, we immediately put therapies into place for him, I ensured he had some support and he had positive people around him.  Along the way I have made mistakes, I have made wrong choices and I have trusted the wrong people.  We all learn and we move on.  Time heals wounds and all that....just sometimes it hurts because time is too slow.

 

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.

 

 

Opening my eyes

Last weekend I had a bit of a cry, not because Stardust upset me, quite the contrary really.  I just felt this painful overwhelming sadness for him.  He has so many things to work on, so much he finds challenging and I was sitting thinking about how amazing he is and how hard life can be and I just could not stop sobbing.  I have never sobbed for him like this before.  Like I said I am full of positivity and I look to the future.  This day I was thinking forward but I was also just thinking how hard everything is for him and it really is not fair.  It sucks.  Like seriously sucks. 

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.

When you use the approach we do, nothing happens fast and you often feel almost like you are moving in slow motion.  Every now and then there is a glimpse at how good life could be for Stardust in the future.  He is tirelessly working at putting all of the skills that he has taught himself into practice.

This week there have been three groundbreaking incidences that have left my heart fluttering and caused drip drop tears to stream down my face. 

One of these was on Sunday.  Every year we have a bit of a drama around advent calendars as Stardust loves Lego and he has always had a Lego advent calendar.  The problem is they cause stress.  He has to open all of the windows right at the beginning as he cannot wait, which is fine, it is his calendar and he can do with it what he likes.  He then has to build the pieces and put them back, sometimes bits get lost and then he just erupts and lava bellows out of him.  He feels frustrated because he has peeked and is generally fed up. This year I have been a bit undecided about which calendar to go for...Star Wars or Lego city so I asked Stardust which he would prefer.  He sat for a minute, I could see his brain tick tocking away and he said ‘I don’t prefer either’.  I assumed in my daftness that they must’ve brought out another so said ‘oh ok which one were hoping for?’  He replied very clearly and said ‘none at all, I don’t want any.  They make me feel annoyed and this year I will do without’.  I was flabbergasted.   He has worked out that it makes him feel so anxious he just does not want to entertain it. I love this.  I think it is incredible. I am thinking at the back of my head he will change his mind before the 1^st of December but time will tell.  If he does that is fine, he has spent time thinking about it and how he will cope and that is all I can hope for.

We had another eureka moment when Stardust had a feeling of massive frustration.  He was hoping to download a video onto his ipad before he left the house and we were hurrying.  He couldn’t find it and started tensing up and clenching his fists.  This is Stardust’s stimming action.  He goes into hyper mode and just gets lost in a world he has to pull himself out of.  It is a dangerous place to be and as soon as his hands go you know that the inevitable will happen.  This day it didn’t; I however had resigned myself to the fact he was going to blow (which on reflection was shocking).  He threw his ipad on to a bag and said he wasn’t going out.  He then ran into another room and sat on the sofa for a maximum of 20 seconds.  I was a bit stressed to be honest as I wanted him to walk out of the door happy as can be and I was thinking....no way is he going to.  Amazing progress – movements that make the earth move....he came out of the room with the sofa and said these words. ‘Never mind I can watch another video, it doesn’t really matter’.  He left the house happy.  He worked it out. He did it all on his own.

Today we have had a bit of a hyper morning.  Stardust loves computer games and we pre-ordered Lego Marvel for his Wii U what seems like an eternity ago.  In his brain and in his way of working things out he knew it was due to come today.  It did arrive this morning when he was having an Occupational therapy session.  It banged like a brick through the letterbox and he heard it and ran.  He saw the box and knew straight away what it was, so we let him open it.  He had a look and then said to his therapist he would play it later, he was doing therapy and he would wait.  He worked it out. He did it all on his own.

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.

 

 

Bull in a china shop

 
Storms brewing
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. 

When an individual is aggressive in this way they cannot contribute an effective part in society.  

This is a terrifying and real worry for me.

The truth of the matter

Stardust has been unable to access certain settings because of his inability to adapt effectively.  He cannot for example access the standard education system.  He is unable to conform in a classroom and follow the demands placed upon him.  He cannot access certain group activities and he finds it extremely difficult to participate in situations where strangers are involved.  Schools have seen him as a ‘risk’ to their staff and to other children and have used restraint as a way to control him and his behaviour.  Friends we have can understandably see his behaviour as a ‘risk’ and he has been rejected and isolated because of this. 

 

What we do

At home we do not reprimand or use adult imposed punishments/sanctions on Stardust for his outbursts.  We do not bribe and we never make deals with him. We talk and use various techniques to help him to limit set independently.  For example we use talking mats, we use play therapy and we follow Ross Greene’s approach of collaborative problem solving.  This can be very hard for those who do not know him to accept, even those that do know him sometimes have refuted our approach.  The facts as they are stand like this.  When Stardust has a meltdown he is in effect receiving too many signals into his brain and it erupts like a mega tornado.  He becomes mute and uses aggression as his tool of communication.  His incidences are becoming fewer, less aggressive and much shorter and we are constantly working on helping him.

 

An insight into his brain from snippets of information Stardust has told me

I would like you to Imagine if one thousand people clambered into your brain, like right into the belly button of it, the central part where it all goes on and talked amongst themselves, talking so fast you couldn’t keep up. Some people start shouting, others whispering, some making noises that really aggravate you and it feels like it will never stop... then imagine that you felt they were all trying to ask something of you.  Lots of questions that you just couldn’t answer, you wanted to but the words were trapped and they could not and would not come out.  Imagine for each and every one of those people talking you could feel their emotions deep inside your soul, that you could not shake it off and that it started to take over your entire being.  On top of all of that, imagine you could smell something horrendous that made you feel like hurling up your entire stomach contents . When you tried to turn your eyes to help get rid of it all there was an annoying light shining that bounced off your retinas and felt like it was blinding you.  The worst, the very worst part of all is that you couldn’t get away and your body knew it couldn’t keep calm. Loss of control is inevitable - KABOOM EXPLOSION

 

What we are doing to minimise occurrences

This is part of what Stardust is living with on a daily basis and he sometimes just blows up. I can get that and I can sympathise and empathise with it. We are helping him to defuse the situations and put strategies in place to help with regulation because as I said he cannot function as an effective member of society when he is aggressive.

After Stardust has had an episode of kicking, throwing, hitting and sometimes even biting he calms and becomes extremely sleepy.  His brain I feel has been knocked off and he needs time to self regulate.  He often likes to chew on liquorice and lie still.   He is fully aware after an event of the damage and distress he has caused....worst of all for him he feels an immense amount of guilt and anxiety surrounding this.  We always talk about what has happened sometimes a day or so later, when the time is right and we chat through all the options of how next time we can work together to make sure that Stardust has the tools in place to do the right thing. Sometimes this can be successful sometimes it isn’t and we need to go back to the beginning and try over. 

 

How Stardust feels

When Stardust is rejected or misunderstood for his behaviour his trust in the human race gets knocked.  Mine does too, I hurt for him and I hurt for our situation.  I feel sad that people cannot and will not see how far we have travelled and how much he has to give.  I feel pain for him and wish I could take it away, put it in a big heavy box, fill it with a ton of metal, put a padlock on it and throw it into the deepest part of the deep blue sea.  Unfortunately we are unable to do this, we have not been given a choice and we have to live with it all, the consequences of his behaviour and the reactions of others – which inevitably are often going to be negative.

He has full awareness of unacceptable and acceptable behaviour, he understands social boundaries but at times he finds it impossible to keep it all together.  This is not because he is a horrible person, it is not  because he is living in a house with adults that let him get away with things, it is not because he needs to be punished to learn a lesson, the natural consequences that occur are reminder enough, the insight he has is painful enough and is a self punishment that resonates to his core.  Stardust has a diagnosis of Asperger’s.  I believe he has gaps between some of the synapses in his brain and they don’t spark the way some peoples do, some of the personality traits that come along with this can be extremely negative.  Stardust has therapy to help develop these links.

He still has a journey to go – he has to work on areas of his being that parents often take for granted in their children, work that most children wouldn’t even consider as work, work that comes so naturally to many that they don’t even have to blink to follow through the processes - unfortunately at times this can be very debilitating and sad.  It is a very painful and raw part of Stardust’s difficulties.

 

People that spend time with us

Over Stardust’s life I have learnt a great deal.  I have learnt a lot about myself, trillions of details and facts about communication, learnt how to slow life down to ensure stress is kept to a minimum and I have learnt that to accept and I mean truly accept Stardust for who he is takes a person made of pure gold. I mean accept that he has difficulties surrounding resilience, adaptability and flexible thinking and accept that there is no quick and easy answer.  I don’t mean accept that Stardust will be aggressive for the rest of his life.  I won’t accept that as I know and he knows that one day his brain and body will always do the right thing.

We know lots of gold shiny people and both myself and Stardust are indebted to these people.  Those that see him for the child he truly is not the aggressive monster that takes over, those that can see into his eyes and have touched him.

They believe in Stardust and they believe our approach is helping put the essential building blocks in place that Stardust so desperately needs.

I thank those that understand and so does he – you are the special ones that will see and comprehend my saying #eyesofagenius

 

Why the name 'Stardust'? and a bit about 'Resolute'

The definition of Stardust is the following:

 

stardust

ˈstɑːdʌst/

noun

noun: stardust

1.  

   a magical or charismatic quality or feeling (that is why the name was chosen)

 

In our house we try hard to be more positive than negative, this is what keeps us all going.  If we dwelled on all the difficulties we had to overcome then we would never move. 

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.