So where do I start, I firstly apologise for not updating for over a week, I had intended on blogging every few days but it just hasn't worked out like that and this week I have had a lot on my mind which I am going to try to relay in todays blog. Things have not been easy lately with Ben but nothing really different from usual. I still am being beaten by my son daily and finding it hard to accept that someone I love so much can unintentionally put me through so much pain and heartache.
Trying to explain to anyone what pain I go through is so difficult, a few weeks ago we had a "child in need" meeting with our childrens disability social worker and Bens teacher. These have to take place every so often due to him recieving some respite through social services and their need to keep check on how we are to ensure we are still entitled to the help etc. At the meeting again we were trying to put into words the difficulties we face with Ben and trying to explain how different he is at home from at school. Following this meeting and our descriptions of Bens violent and aggressive behaviours, which I am sure should be on notes etc everywhere anyway as it is something I have been bringing up in meetings like this for years and asking for help with etc, the social worker decided to visit us at home one day when Ben was at school to discuss these issues in more detail.
I am an honest person I always believe that without telling the professionals involved all the details and truth of what Bens strengths and weaknesses are we will never get the appropriate help. I have never once lied to any of these people and I have never exaggerated. I know for some people this is the way they deal with professionals, family and friends but I have never and will never do this, I can not see the point in lying or attention seeking, I tell it as it is and if people choose to listen and help then thats great if they choose not to then thats their choice. I never understand how people can use their childs needs to constantly draw attention to themselves and make people ask them how they are daily. I am still Jen a reasonably normal human being with my own problems and my own life being a mum may take up a huge proportion of my life but it isnt all I am, I still have opinions, beliefs and ambitions and that is how I hope things can stay. I never want to just be known as Bens mum who only ever talks about her child and who never has anything positive to say. I hope I come across that way as I blog to raise awareness of the difficulties faced by both myself as Bens mum and of Ben in his journey through life as a violent agressive little boy who has autism.
At the home visit with the childrens disbility social worker we again described the day to day occurances in out household and the violence that I face daily. I also emphasised the fact that often there is no trigger to this violence and more concerning is the things that Ben says during these aggressive episodes. He recently has started talking to and referring to different sides of his brain which are telling him to do different things. Obviously hearing this and other similar things coing from my six year old sons mouth is absolutely heartbreaking. The result of the visit (with just us not Ben) was that she is concerned that we are physically restraining Ben quite often during these episodes of violence and dispite these being for his and our safety and us doing this as a last resort she has said she needs to speak to her manager about it as this makes us borderline a child protection case. Ben is never bruised or hurt following this and we do not want to do this to him but have no other choice as we have been asking for a few years now for help with his violence and to be taught safe ways of restraining him when needed for his and our safety but this has always been refused. We were also advised to contact the paediatrician to speak to her about the things he has been saying and see what she suggests. As a result the paediatrician is referring us again to CAMHS (child and adolescent mental health services) for help with his behaviour. Now I know this doesnt actually sound too bad, but the problem is we have been backwards and forwards to CAMHS for years and have never been advised to do anything more than reward charts, removing things when he behaves badly, 1,2,3 magic (behavioural technique), rewarding good behaviour ignoring bad, and other similar theories. None of which work due to Bens autism and understanding but also due to his lack of attachment to toys and not seeing any benefit in a reward. Ben needs constant reinforcement to even stand a chance of him doing as you ask which is just not possible when its so many hours a day and even then he rarely does what he is asked. So now we are referred back to CAMHS who will no doubt again refuse to actually observe my son and refuse to believe these theories do not work then refer us back to the paediatrician. After mentioning this to the paediatrician she said she would ask for us to be referred to someone different in the team, but I am not holding out any hope, very sceptical you may think....... no just realistic, we have been down this road before and always end up with the same worker who does not help.
So now we are left with the fact that we may have a child protection label added where we are on paper as a physical abuse risk to my son when in reality we are just trying our best to stop him from hurting me (he almost pushed me down the stairs a few days ago, i only just regained my balance), and from hurting himself (in these episodes he headbuts my head and punches me so hard it really will hurt him one day and often he is also banging his head on the floor and on any hard object available in his 'rage').
What do I think now then of the social worker, well I do not blame her she is only doing her job, I just hope that someone somewhere sees how difficult life is for us and instead of writing it down and criticising we get some help and more importantly Ben gets some help so that he does not grow up being a boy who we can not take places and feel unsafe with. I want to feel only love for my son, not love and fear.
This week has been so difficult because of the above for me and I have been also wondering what the future holds for Ben in a society which is becoming more and more accepting of visible disabilities but invisible disabilities like those my son has are still very much a taboo and are seen as acceptible to discriminate against and joke about. The following three "news" items have all happened within the last week or so and all break my heart when I think this is what my son has to face in life especially when I am no longer here to protect and shield him from the judgemental, prejudice and bullying people out there.
A newspaper article where a reporter openly says she believes there should be a test for autism so that all foetus' showing positive for autism can be aborted. I wont go into great detail about this as a former blog post describes my feelings towards this. My main thoughts are though what would she do if she had a "normal" child who had an accident or infection (or similar) of some kind and was left with brain damage or something similar to autism, would she then say she believes in euthanasia???
http://www.dailymail.co.uk/femail/article-1116602/Why-face-truth-Having-autistic-child-wrecks-life-.html
A newspaper article about an eighteen year old young man with autism who died of burns when what is believed to be a prank went wrong, his peers who were presumably of a similar age had been playing with tanning oil and somehow he got burnt, a bit coincidental that he got burnt and died yet they were all fine don't you think???? This breaks my heart, this could be Ben one day, I really feel for his family and true friends, not supposed friends who did this to him. The sad truth is this story barely made the news that day as it was the same day that Tom Cruise and Katie Holmes' pending divorce was made public, what does that tell us of the society we live in, I am ashamed to live in a society where that is more important to the news editors than a persons death, possibly murder.
http://www.dailymail.co.uk/news/article-2166327/Autistic-teenager-Steven-Simpson-dies-burn-injuries-tanning-oil-prank-went-wrong.html
Rapper 50 Cent tweeted that someone was a fool and looked autistic, he then went on to say that he didnt want special ed kids on his timeline on twitter and that this person should follow someone else. As a popular rapper with young people what is this telling the youngsters of today, that it is ok to speak to people like this, will he be prosecuted for this? Will he learn from this? Will others learn anything about the truth of special needs education and autism from this outburst of his? The answer I imagine to all of those is no, yet as the question will he have more publicity and twitter followers because of this? and I would put money on the answer probably being yes. What does this tell you about the society children like my son are growing up in? What does it tell you about the discrimination faced by children and adults with autism?
http://www.huffingtonpost.com/2012/07/05/50-cent-autism-tweet_n_1651256.html
Please please help to raise awareness of what autism really is and help to make society see that although this disability is invisible at times it is still there and still needs to be taken seriously!! I blog to try to raise awareness and am always more than happy for anyone to share my blog to raise awareness.
