Monday, 30 March 2015

Autism awareness - My Children

I have written about our autism story and how he came to get the diagnosis on previous posts.  Please look under labels section - ASD Diagnosis.  It starts from 10 fingers and 10 toes. 

He is now growing into his own person and will be starting secondary school this September.  Since he has had his diagnosis - life has been a rollercoaster.  Some parts of this experience I am still healing from, which makes it difficult to write about.  I would love to have a 'and he got diagnosed, it was all clear what we had to do from then on, services were all to happy and easy to assist and we all lived happily ever after' story to write, but we don't.  It is much more a 'we fell down a rabbit hole, into a completely different world, everything we thought we knew or had hoped for, was turned upside down, we had to hunt for information for survival, perform various tasks and amazing gymnastic feats to get the help he desperately needed - a dream that you could not be woken up from' type of story.  That aside, it does not mean we don't have positives or happy tales along the way. 
My son is high functioning and as such has a diagnosis of Aspergers.  He is clever - I don't mean a every parent thinks their child is clever kind of way, I mean he is high achieving academically.  He attends a special school, so I think others tend to think 'he is a bit slow'.  He is not, he has levels that exceeds mainstream school expectations.  He is at a specialist school because he cannot cope in a mainstream environment.  There are not many schools for my child (because of his academic abilities) and we have been extremely blessed that he attends a specialist ASD school, which is also sponsored by the NAS (National Autistic Society). This has been a massive battle for us.  Specialist schools are not all the same and they are not automatically assigned to children who need them.  It has been a heart breaking journey, watching him struggle through mainstream, managing different professionals (out reach workers, behaviour support specialists, CAMHS, educational psychologists, paediatricians, consultants), statementing process, exclusions, battling with the authorities, paperwork, proving and disproving what he is and is not capable of, hunting down a school, home educating, contacting MPs... I have to say - It was completely worth the fight.  His school has transformed our lives. 

He feels good about being autistic, that it is a part of who he is and he does not want to change it.  He is in the right place for him.  His school is a great blessing! Life is not all rosy though, as he still has autism and we still face lots of difficulties because of it.  The school are brilliant at recognising the difficulties and helping him through it, teaching him in a way that helps him to learn - overcoming the barriers.  The plan is for him to continue here (just waiting on his EHCP - the new statement) even that is not as simple as it sounds.  We are still battling. 
I think our son does confuse others perceptions of disability.  He is clever, sporty, great sense of dry humour, he looks like any other child of 11 and he is very articulate but struggles greatly with communication.  This may seem contradictory but he finds it almost impossible to communicate his needs/feelings.  For example, he will not buy anything from a shop, as his anxiety levels of talking to someone he does not know about a need/want (ie to buy sweets) is too great, he would rather be hungry/thirsty or lost.  He also has other communication difficulties, even though he appears very articulate, his autism can often be overlooked or commented on as mild by others, at first glance because they do not have the in depth understanding about autism.  He finds other people really hard work, we do not conform to his perceptions - we are erratic.  Social functions are really draining for him.

He cannot cope with crowds of people.  He becomes extremely anxious about doing or going somewhere new, even though he wants to do it.  He is sensory sensitive.  Overloaded by tactile, noise, visual stimulus causes him pain - unmanageable pain.  He wants to avoid this pain, therefore he will do what he can to avoid or stop this pain.  It is often the lightest touch that causes him the most pain.  This worry (sensory pain) can also stop him from going somewhere new - it causes anxiety.  We have to follow routine, order and plan/manage in anything new.  Change is very scary because of his anxieties.  These anxieties, if not managed or ignored lead to meltdowns.  Meltdowns are not fun for anyone.  In his case, they can be dangerous, they have to be handled in the correct way to help.  Meltdowns are not always aggressive in ASD but for our son, they are.  Some days are bad days - we do not go out on these days.  Just because you have not seen him meltdown does not mean it doesn't happen. Plans have to change and that's just the way it is. 

Autism is not endearing like other disabilities may appear.  When my child is having a meltdown, no one has ever said 'oh look at that poor child, he is obviously not coping very well, his anxieties or fears have overtaken him, how awful for him to feel like this, that poor helpless child' People are scared and look disapprovingly at us.  They wonder why I am not being more angry, why I am not disciplining him, why I don't hit back, why I am being calm, etc, etc as my child is physically attacking me, biting, destroying whatever is around, running away/climbing or hurting himself.  We are judged - I see them staring out of the corner of my eye.  Honestly, I don't have time to care about them at that point, I do what I have to do, to calm my son down.  I speak in a certain manner and use sign language to not only help him but to try and show the audience gathering around us that there is more going on than they initially thought.  The triggers are not always obvious and I have to think quickly, I have to remain calm - I cannot add to his distress as it will make the situation worse.  I cannot discipline him out of a meltdown - it is not the same as a tantrum, we are not dealing with disobedience, this is not his choice, he hates this.  I cannot physically chastise him out of a meltdown - it is not a naughty behaviour or a case for showing who is stronger, I cannot (not that I ever would) scare him out of a meltdown - he has reached the point of his anxiety/fears overwhelming him so much, that he cannot cope with how his body is feeling and cannot process another feeling/word. It cannot be rushed through.  If I talk too much or give too many options, the situation will become worse, as he will not be able to process the information, let alone act on it - I have to be patient, I have to show empathy to him - he cannot see the situation from another's perspective (it is not possible for him to do this) but I can. 

I have to think big picture which can look to others like I just give in but I am not, I am thinking and prioritising what is the most important and what is it that ultimately needs to be achieved.  He is scared and I need to show control to help him through.  Once he has calmed down enough, I have to be vigilant as a tiny action/comment could lead us straight back to meltdown.  I remember reading, it takes at least 90 minutes and up to 3 days for the body to chemically recover from a meltdown.  I have been on courses and have learned the best way to deal with his meltdowns from professionals and have learnt from experience what works best for my son - I am not being too soft by dealing with him in this way, as others who just witness an aggressive child acting out may think.  Autism awareness is needed, as sometimes (granted not always) there is more going on when a child appears to be having an outburst.

I also have to consider the fact I have 3 other children, younger than him, so they are not old enough to look after themselves - this can make going out without an extra pair of hands foolish/dangerous.  As I said above, some days are bad days so planned events just won't happen and yes, it can be very disappointing for them as well as for me but their safety comes first.  This not only effects his siblings in terms of what we can do as a family, but this is what they see - this is their normal everyday life and it is hard for them.  It is hard for them that they maybe the target of his aggression, the stares from others, watching their mother get hurt, things being destroyed, seeing their brother so distressed, that the brother they love and play with, change so much in a meltdown and trying to understand what this is all about, as a child, when so many adults struggle with it.  It is hard for them.  Thankfully, we have learnt a lot along the years and not everyday is filled with meltdowns (there was a time when it was).  We may have to do things in a certain way, which can be restricting at times but it is better for all of us, to do so.  My son copes so much better now, than he used to and as he gets older and learns more coping strategies I am hoping the meltdowns will become less and change from the aggression.  His younger siblings are carers, without even realising it.  They have learnt to adapt, to stick together in a meltdown, when to get help, to have empathy for someone who cannot show it back, they see the stares too - they hear the comments, leant to care and to love. They learn this and more each day, to compromise, the disappointments, to deal with a stress that their peers do not face.  They are not responsible for any of their brothers care but they see the challenges and face them with him, as we are a family.
I don't want this post to be negative but wanted to highlight SOME of the difficulties he faces without being too revealing about him, as I appreciate he is growing up.  On first meeting my son, you may not notice or even think that he could possibly or have the difficulties I describe above - do not underestimate his autism.  Just because he does not necessarily fit a preconceived idea about autism, just because he is high functioning does not mean he is not profoundly affected by autism.  He would not be in a specialist ASD school if he was just a bit mildly autistic, they are not easy to come by.  I also don't want those with younger ASD children thinking or believing there is no hope - because there is!  The battles and the time we have put in, has been worth it, as over a long period of time we have conquered many things! This gives me hope for the future, that my autistic child may well grow up to be a successful happy adult.  By successful, I mean to live and function independently in the world. Here are some examples of the problems we used to face but now no longer...
  • Would only eat from a red plate
  • Sandwiches had to cut in 4 squares
  • Had to eat sandwiches, a cheese and a yogurt everyday, regardless of the day ie Christmas
  • Malties for breakfast only (he had this for years)
  • Smearing pooh from his nappy (yuck)
  • Eating weird stuff ie paint, slug
  • Running off randomly
  • Overly friendly to strangers (now we have the opposite)
  • Climbing everything (he still does a bit of this but no where near the scale he used to)
  • Escaping
  • Turning on and off light switches/buttons
  • Opening all cupboards and doors
  • Obsessions have changed and morphed into new ones...
  • Getting dressed (undressed fine)
  • Not being able to be left in a room by himself (he said he felt like the room had eyes and would close in on him)
  • Reading Thomas the tank engine books, over and over - and over again
  • Looking at the periodic table, a lot!
  • Moshi monsters!!!!
  • A short trip to town/supermarket is now possible :)
  • Climbing out of windows - whatever floor we were on
  • Being constantly on the go
  • Just lashing out (he will now give a verbal warning if you are doing something he needs to stop)
  • Following instructions
  • Helping and doing something for others (still a work in progress but will do it)

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