From previous blogs everyone knows I'm a single parent and I have an Autistic child.You're probably thinking yes we know that so what?The so what is the lack of understanding from people and cutbacks in services due to government cutbacks which has a knock on effect on families like us.Society views on our so called bad parenting which is not the case.
There are over 100 different types of Autism,basically its like a huge umbrella starting from very severe,unable to speak,walk and cope with day to day things like everyone else takes for granted to high functioning.No type of Autism is easier or harder than any other each has the same issues and the care is demanding.Its a 24/7 life time disability but people don't or choose not to understand.Its not a new disability after all Einstein was suspected of having Autism.You say Autism to people and they say oh like Rain Man?No its not Rain Man!
Autism quite simply to me is their brains are wired a bit differently from our brains.Social situations are hard to deal with,obsessive behaviours ie Thomas the Tank engine,Transformers,computers etc.Sensory issues ie certain noises,textures,smells etc.Routines,social stories to adapt to any changes that are happening,timetables so they can see what is happening each day.Labels in clothes which have to be cut out as the feeling drives them crazy.Non verbal Autistic people have to learn Makaton,a form of sign language,PECS,picture education communication system,picture cards,word cards,picture timetables.
I've had to learn all this luckily I don't have to use a lot of it anymore BUT I still have to deal with the meltdowns.Some parents are lucky to be offered courses such as EarlyBird and EarlyBird Plus which helps you understand Autism a bit better and how to write social stories etc.Makaton is also another course which I'm a bit rusty with now as I haven't used it for a few years.When they're under five you can get a Portage worker which helps special needs children through play.I still have photos when my boy had Portage.What happens when they are at school?Some go to special schools while others go to mainstream education thats when the battles begin.Education psychologists,SENCOs,psychiatrists,that is when a whole Statement of Special Educational Needs begins.Its a long drawn out process and you have to push for things.They don't give them out very easily.
Meltdowns are very scary at times and I don't mind telling the world that!As they get older its more frightening because they got a lot stronger especially when I'm only a 5ft2 skinny thing and my boy is taller than me at 11 years old and broadly built.I admit he scares me when he has a meltdown as i never know what is going to happen and if I'm going to be able to defuse the situation without it escalating.I can mention lots of incidents one sticks in my head when he was younger before the medical profession introduced medication.Picture this dumb bells being thrown at you from the top of the stairs,bedroom being smashed up and you have to try and calm them down.Its a scary feeling but you can't get emotional you have to stay calm otherwise it escalates.You restrain and calm the situation,your child is lying on the floor with a quilt wrapped around them and you're sitting on top of them as they're sobbing saying it wasn't them its an alien taking over.Few hours later all starts again!!Six foot high bookcase full of books crashing down to the floor and you have to shut yourself in a room for your safety and ring for help as its out of control.What got me a few years was an unhelpful police officer saying to me if your son was older he would be charged with domestic violence.Wrong attitude matey he's a child crying out for help!
Some people say medication is not the answer in this situation it is trust me on this everyone's situation is different.Without medication one of us to be brutally honest would be in hospital.I still have that threat in my head and I have been told by professionals that is the reality so I have an emergency 999 plan.You're probably thinking how can you call emergency services on your child?Its going to come to a point I will have to for my safety,my son's safety and the safety of others.I've been beaten by him,had tape measures wrapped around my neck etc but I still love him as I know his brain is overloaded.
Self harm issues is another one.Twice my son has tried to hang himself once was literally a couple of days ago.My boy has even been in a playground and tied a plastic bag around his neck and dinner ladies didn't notice luckily he took it off.I've had my boy run away from school when things have got too much and even once ran away from home and police have found him.
What does the future hold?To be honest I have no idea and it scares the living daylights out of me.Reality is according to professionals he's not going to be able to live on his own and he could end up in a secure unit or worse.I have to take each day as it comes and live each moment as it is but I love my son with all my heart and that to me is important.He needs to know I'm there for the rest of my life no matter what happens.
I'm hoping people who read this can understand what it is like and maybe a few of you can relate and understand this.No matter what we are all different and unique and we should have more understanding of others.Never judge a book by the cover as the saying goes.
Please feel free to comment
No comments:
Post a Comment