My cheeky little man!!

My cheeky little man!!
Showing posts with label special needs. Show all posts
Showing posts with label special needs. Show all posts

Sunday, 8 July 2012

Pain, "Professionals" and Prejudice

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???

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.

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?

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.

Saturday, 16 June 2012

A follow up to my post below...

If you google any word pretty much and autism you will find either a suggestion that it causes autism or cures autism, so mnay people are looking and suggesting cures for this disability. When your child is first diagnosed with autism it is a scary feeling and many people if not all wish for a cure immediately as the thought of something new is scary and this is to many entering a world they do not know.
This is something I have read many times and to me really sums up autism and many disabilities and the fact that it is different to what you expected from parenthood but wonderful all the same. When you have read this maybe you will agree with me that Holland is just a different place and that doesnt mean we need to prevent a trip there, cure people who are there, or try to check the flight plan before its in place!


Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Friday, 15 June 2012

If there was a test for autism in pregnancy........

I have often been asked if there had been a test for autism in pregnancy would I have taken it and if I had known my baby would have autism would I have had second thoughts about the pregnancy. I have also often been asked if I would take away Bens autism and other issues if I could. Well if you are reading this as a parent of a special needs child you may have the same view or a different view from me but I am sure you will agree that everyone loves their child no matter what their needs are. I hope I dont offend anyone with my views and if you disagree with me please dont be nasty in saying so but youre welcome to tell me what you think!

So firstly the whole idea of a test in pregnancy, I personally think it is unlikely there will ever be a test for autism in pregnancy but as there is a test for downs syndrome. The problem with looking for a test in autism is that until there is a cause or a way of diagnosing it other than ruling out other things and observations etc this is going to be impossible. When I was pregnant it was slightly different to what I believe it is now for tests for problems. I had a scan at 12 weeks to check dates and heartbeat then another scan at 20 weeks to check development such as the development of the spine, heart etc. The only other test available was the amniocentesis for Downs syndrome, this at the time (and I believe still does) carried a risk to the unborn child of miscarriage. Now I know some people will very much disagree with me here and if you do I totally accept that everyones decision is their own but for me this was a "no brainer"! I was not prepared to take that risk when whatever the results I knew that I would have no doubts but to continue with my pregnancy I had already fallen in love with my baby. I personally find it hard when people tell me the news that they have had whatever tests it is that are no available and are "so glad their baby will be normal and not have Downs syndrome" to hear that breaks my heart. I know there are a lot of differences between Downs syndrome and autism however the idea that one test means you have a guarantee of a "normal" child to me is horrible. There are so many potential problems, only one of those is autism. In my eyes and maybe I am biased these people are very naive and if there were tests for every possible disability would they take them all or would they pick and choose?? Where do you draw the line?? Of course any tests in pregnancy could never predict accidents, illnesses etc so the guarantee of a "normal" child will never ever exist. Like I say I know many will disagree with me but to me a child is a blessing and if I was pregnant tomorrow and there was a test for autism, would I take it, the answer is no, without a shadow of a doubt.

So, would I take away Bens autism if I could?? Well this is much harder to answer, I wouldnt want to change him because he in my eyes is just wonderful just the way he is, he is a challenge a lot of the time, he makes life like one long obsticle course. However he is Ben, who would he be without the autism, would he be the same little cheeky child who draws every picture with a trump or bottom on, would he be the little boy who gets excited every morning about waiving to cars while he waits for his school bus, would he be the boy who cuddles me so tight I feel like I can't breathe?? The answer is nobody knows so for that reason I could never give Ben that magic pill if it existed to "cure" him from autism. That said I would love to take away some of the things he does to himself and us because of his autism and other needs of course I would because who wants to see their child screaming in a meltdown because something has distressed them so much their whole body cant cope and goes into a place where he has no control at all. Who want to see their child struggle to do all the things that other children can do, even simple things like a trip to the park are near impossible if there are other children at the park at the same time (something which of course cant be predicted!). Those elements I would love to be able to change but I would change them so that Ben could be Ben and cope just the way he is. He isn't different, he isnt not normal, he is a child, he is 6 years old and he is wonderful, the only difference is he is wired differently, his brain doesnt work the same way as other peoples and that is an invisible issue however this invisible disability becomes visible and very physically disabling when due to his different wiring (or that of another person with autism obviously) he is unable to do things other people can. Sometimes Ben physically cant walk because he is so distressed his brain is in overload and he has a meltdown which is so much more than a toddler tantrum that people often see it as. a meltdown is when a person with autism or another similar disabilities body is so overloaded that it can no longer do anything, this can last for 10 minutes or a few hours, meltdowns can follow one another for a full day. Try telling a parent/friend/teacher who is with a person with autism during these periods that autism is invisible and isnt at all disabling, it may not be a child in a wheelchair but that doesnt mean it isnt a disability and should be viewed as just the same, a child (or adult) who is different, this doesnt mean they are not normal because what is normal anyway, define normal??

So, would you change a child just because they dont fit in with what you consider to be normal, or would you change the world to fit in with every child and adult who is a little different so that differences are embraced not differentiated?? I know which I would choose! There is no test for autism in pregnancy and I really hope there never is, some say that is very selfish and crazy of me but you know what I dont care, the reason I hope there is never a test for autism in pregnancy is that if there is then there stands a chance that a child, or more likely lots of children, will be denied the chance of life because of just a different wiring, a child like my Ben and the idea of someone doing that because of the worry of having a child who is a little different makes me want to cry. Life with Ben is very hard but he is wonderful all the same and he deserves just as much of a chance to live a happy life as anyone else. His view of a happy life may just be a little different from other peoples.

The idea to write this as the subject of tonights blog came from seeing the below quote online