My cheeky little man!!

My cheeky little man!!

Thursday, 16 August 2012

Who are Social Services anyway???

So firstly I must apologise to anyone who has followed my blog for the long break in posts, its ben just over a month and I have not forogt about my blogging but I have been busy with one thing and another and also I kept nearly blogging things that happened but then for one reason or another waited in the hope to have an update on something to then add etc. Well here we are about 5 or so weeks later and there is so much to say!!

To answer what may be your first question, has there been any changes to Bens behaviour, aggression and problems? The answer is no, not any for the better anyway, but then thats what we expect, nothing changes overnight. Did you think differently? Did you expect Bens problems to suddenly disappear? If so admit you are Bens disability social worker reading this or someone trying to refuse us the help we need! To those now puzzled and who are not the Social worker or psychic the reason I say this is about a month ago our new Social Worker came to play with Benas she said she had to meet him. She chatted to me about his problems and then played lego with him for about 15 minutes. A week later when she phoned about a meeting she asked if he had improved since her last visit!? You see thats what we have missed all these years clearly, magic lego! I really hope after the phone call she realised how daft a suggestion it was that her playing with my son would change matters so easily! Maybe it was wishful thinking, maybe it was lack of understanding of special needs, maybe she just thinks she is so wonderful she can cure anyone of anything, or maybe she just didn't think before she opened her mouth (we have that effect a lot with people!).

Since my last post we have had the end of term at school which included the usual changes to routine of sports day, different assemblies etc and of course this and knowing he is moving into a different classroom in September with a different teacher and some different children has really bothered Ben and of course this has meant difficult behaviours at home. Well more difficult than normal anyway! Normal for Ben of course I mean by this, not normal for your average neurotypical child who is far far different from Ben.

What does a Childrens' Disability Social Worker do to help a family like ours?

I might ask one day for their actual job description because I am sure somewhere in there words such as assist, help, support, and other similar words or phrases will all feature and I am pretty sure there will not be words such as patronising, rude, criticising, "guess what you don't actually know", judgemental, and presumptuous. Maybe I am wrong? If anyone reading this blog post has ever seen a Social Worker or Social work Assistants job description please do let me know.

Surely one thing we should be able to presume is that this group of social workers will have some experience or training when it comes to special needs and if they do not understand a child's needs they would ask the parents or a professional dealing with them about it and accept they are human and can not possibly know everything. Well it seems presuming that is very wrong! In my experience many Social workers in this team have watched a few documentaries on autism and know just about that. They believe when they have met one child with autism they have met them all. In reality if you have met one child with autism you have done just that met one child with autism. My child may have a label of autism but he is as unique as any other child out there. He is also a boy, he is 6 and he loves sweets, so if you meet another boy who is 6 and loves sweets would they be the same, well of course not so why does that mean two kids with autism are the same?! Or is it that people are scared of autism and cant bear the idea that "they" are not all the same and there are more than one of "them" to try to understand!? I never presume anyone understands my son, I would never expect anyone to who hasnt lived with him but what I do wish for is that everyone who sees us in a professional and social capacity will at least understand that they do not know what it is to live with Ben, there are only two people in the whole world who know this, myself and my husband.

The reality of the latest of our allocated Social Workers

So, a few months ago we had a review for Bens direct payments. This is a meeting with Social Services and anyone else relevant to discuss Bens needs and what respite they think we need and if what we have been given is enough. We only started getting direct payments in February, not many people truely understand why we get them and believe that as two parents at home with one child we shouldnt need them. If this is you then please read through my blog, imagine living with this 19-20 hours a day (not that imagining puts you in our shoes but its the best we can do isnt it!), yes we do have a break when he is at school but thats five days a week 40 weeks a year, what about the rest, what about us getting a chance to do all the things we cant easily do when Ben is home. We can not take him shopping, we struggle to take him anywhere in all honesty - we do because he needs it and he is entitled to a bit of a life but it is hard for us and him whenever we leave the house, what about us getting a normal amount of sleep? Not to mention free time! So then think actually the 2 hours a week of respite we get is just allowing us get 2 hours of a break a week because while he is at school we often sleep and have to get shopping, clean house and try to prepare ourselves for the beating and abuse that returns when he gets off the school bus! Anyway I digress, at this meeting the Social Work Assistant (Yes we don't even have a trained qualified Social Worker) decided this behaviour we have been mentioning and asking for help at meetings for over the last maybe 4 years or so is not right and we need help! Of course the idea someone wanted to help was lovely and we didnt object to her coming to visit a week or two later to discuss further.

The home visit came one day when Ben was at school (yes another thing that happens when he is at school and fills our time, appointments etc!). She discussed all the things we have tried and continue to try to help improve the aggression and violence we suffer from Ben and the reasons why we physically have to restrain him at times. We restrain him for both his safety and ours, as mentioned before this isnt through hoice this is through necessity. I would also like to add I have never harmed my son during this and he sometimes calms as a result of being restrained, other times it is just enough time for us to breathe and calm him to the point he is not causing as much pain as he was before. I do not choose to do this to my child, I do not want to cause him unnecessary physical or emotional uncomfortableness however this is a necessity in our house, this is the only way we can stop him from doing any more damage to himself than he already has and stop him from seriously harming us, particularly me as I am the one who most suffers from his violence.

This was the day the Social Worker (well assistant but you know what I mean) first mentioned child protection. she said that due to us physically holding Ben she believed we may have to have Ben placed on the Child protection register under the category of physical abuse. As I am sure you can imagine this broke my heart, Ben was placed on this as a baby for a while due to his natural father and the thought that I was being seen as equal to him and that they see me as causing my son harm was terrifying. Again I must point out that we have never caused ben any bruises or marks due to this and it is necessary for his safety and ours. We have never been taught restraint techniques in order to know how to do this properly because we are his parents. We have asked for this for years as Ben is very big for his age, he is 7 in november and his clothes are mostly ages 8-9 with a few larger 7-8's. Just to put this into perspective due to his height he is only a 3cm off not needing any kind of child restraint in the car legally, and he is so heavy he is hard to lift now and this is made much harder when he is physically lashing out with his entire body. On this occassion we were told that she would need to discuss matters with her manager and see what the procedure is.

As stated we have never been given any teaching of techniques used to restrain a child with violent behaviours like Ben however we have researched MAPA and this is what all the staff and the Special Needs School Ben attends are trained in. We believe we do something a little similar to this, what we do essentially involves "bodyhugging" Ben so that he can not easily move any of his limbs or use his head to headbut whilst h

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, 30 June 2012

A few notes I wish I could send.....

Its always much easier to write on here how I feel about things and of course to say how I feel but to put them onto paper and send or give them to someone is a whole new matter and on the whole would achieve very little! So here I thought I would write them down to share.

Dear Ben

You are my only child and you are my everything. I wish I could make life easier for you and take away the stress you live with but keep that lovely little personality you have, that wonderful cheeky grin which we only see when you are truely happy and coping well with life at that moment. I wish that I could be a better mum to you and had the money to do everything possible with you, take you on wonderful holidays and buy you all the wonderful things which would make your life easier and a bigger house so we could have a calm down room or area for you. I think you are amazing how you manage to sleep so little and have so much energy but I do hope in time this improves as you do wear your mummy out! I sometimes watch you sleeping, you didnt know that did you but I do, I look at you and I wonder whether you are dreaming, whether in your dreams things are so difficult for you and how much longer you will sleep for. Sometimes I sit next to you and cry, just small silent tears as I dont want to wake you, I cry because I know I could be much more patient with you at times and I wonder whether you love me as much as I love you. I know that is impossible for two reasons, firstly because the amount I love you just can not be replicated and secondly because I know you do not really understand emotions too well so maybe you have difficulty in seeing me as anything other than just mummy. I hope that one day I can share all these things with you darling and you can understand that I might not be perfect but I have tried my best and I always wanted you to have the best I could manage in life.

Love always


Dear Stranger in the shop,

I know to you there is a big boy here lying on the floor screaming and that is strange so you are entitled to look but what I would like to tell you is there is a huge difference between looking and staring. Please also remember whether the child in front of you can hear you or not in his meltdown, thats an autistic meltdown not a toddler tantrum there is a huge difference, his mother can. Do you really think that tutting and muttering will change matters? Do you really think that as a parent of this 6 year old who is big for his age I have never tried to maybe ignore him or tried a reward chart? Do you think my son really wants you to stand and tell him to stop being a baby? Do you enjoy watching other people struggle? Maybe you should stand and glance across and instead of commenting that hes naughty or needs some parenting strategy or other please glance across and see a child lying on the floor screaming and think just that its a child lying on the floor screaming, you dont know why, you have probably never met my son before, please just walk by and hold your head up high. Why should I hold my head up high you ask, because you have made me see that day that not everyone stares and maybe even just one person understands that it is rude to stare! I hope that when I next see you and my son is having a meltdown you will just smile and walk on, that would be the best help in the world, much better than any well meaning advice from someone who knows nothing of the difficulties facing my son.

I look forward to that smile
Tired looking lady with the child who rolls on the floor


Dear Friend or family member,

I am sorry that sometimes we have to let you down or cant go places you want us to. I am sorry that sometimes I can not talk to you as much as I would like. I am sorry if sometimes I snap when you try to help by giving me suggestions of how to raise my son. What I wish I could tell you is that although sometimes you see us and Ben copes very well but what you do not see is the difficulties we face afterwards and the following day or two. I know maybe you think we should suffer that so that Ben can enjoy the day out or the visit to see you but what maybe you are forgetting is that an autistic meltdown is due to him struggling. So thinking of it that way do you see why sometimes we as a couple decide that we would be better staying at home and sticking to the routine in which Ben copes with best. I wish things were easier and we could do everything we wanted to but hey life is not always easy. Ben due to his autism likes his routine so maybe some consider us boring or think that we pander to Bens every need but please remember this is our choice and life with him can be extremely challenging and the idea of making it more so sometimes just fills me with dread. Please also try to remember that sometimes I snap when you suggest ideas to me of how to manage Ben better or be a better mum and I do know you do this with the best intentions but I live with Ben day in day out and as a family we have tried various strategies and sometimes when we are having a bad day any suggestion I take as a criticism. I shouldn't snap at you and I should try to listen more and for that I am sorry. I am also so sorry if you look at me and wonder why I never make the effort to dress up or put make up on when I see you. It is not because I don't want to or because I think you are not worth my effort, it is because most of my clothes are torn and if I wear jewelerry it often gets broken and pulled at and make up gets smudged, this is because I rarely dress up through lack of time and motivation so on the occassions I want to this is a big difference to Ben and as you know he doesn't cope well with change. Please please be assured I do not think any less of you I really don't I value you so much and wish I could be the friend or family member that you truely deserve.

lots of love
Jenny xx


Dear Reader,

I just want to be able to tell each and every one of you that I truely appreciate you taking the time to read my blog. Knowing that people care enough to want to understand how things are in our house is truely appreciated, you may not have ever spoke to me or met me, you may know very little about autism or you may also have autism in your family. Whoever you are by reading and sharing my blog you are helping me to do what I aimed to do when I started blogging a few months ago and that was to spread a bit of awareness so that more people could see how autism is such a double edged sword and how it affects us. I also wanted so much for people to understand that when you have met one person with autism you have done just that, met one person with autism, everyone is different and although there are some similarities they are just as different as picking any two people off the street autistic or not. Thankyou so much for reading and following our story and please if you like reading it share it with others so that I can reach more people so people in a similar position know they are not alone and so that people who have no experience at all of autism know a little, but also because it makes me smile when I see how many people have read it, vain I know!!

thanks for reading

p.s. if you want to find me on twitter feel free im @mrs_Jen_mellor pop by and say hi I dont bite!

Friday, 22 June 2012

Can this really carry on??

Tonight after another violent few hours with Ben I find myself questioning again whether things can carry on like this if we dont get any support to help with the violence my lovely boy exhibits. I regularly wonder if my son would be better with someone else as his mum as 99% of the time it is me he targets. However I rightly or wrongly can not bring myself to take that huge step from which there is no going back. I love my son to bits and if there really is no option in the future maybe I will have to accept that I am not good enough to be Bens mum but until I have to I will try my very best and accept the pain, the heartache and the difficulties. Ben is my son, he needs me, how could I ever give up on him when I am his mum his carer his everything.

Every day I am in pain, it hurts when I brush my hair, get dressed, bend, move, basically everything I do is painful. Maybe you know me personally and think this can not be true because of the way I always try to smile and carry on as normal. I do not complain and openly cry, I do not update my every move on facebook or by texting/calling everyone on each of these occassions. Why do I not do this, because I know that if I did then it would not change matters the pain would not be less. The only difference would be that everyone I complained to would see me differently whether as a victim, a moaner, someone who never stops complaining??? Or maybe I would be seen as a liar because who would believe what really goes on here behind closed doors. Ben is six if I were to phone you whoever is reading this and tell you everytime these incidents occurred you would have calls numerous times a day every day. If you heard that day in day out would you really want to know would you really believe me?! Im not sure if I was in your position and hadnt experienced this I would.

So why do I write this blog you must be thinking, why do you tell all to anyone who could read this blog? I do it because by writing this I can get my feelings out and stop the emotional pain building up inside. It doesnt really help with the latter but I must admit it does help a little getting my feelings into words. I hope in time maybe the emotions will stop building up but who knows only time will tell!!

I do not feel it necessary to bore you all with the details of the beating I have endured today as there is another blog post about these incidents in more detail. Needless to say a lot of hitting, hair pulling, punching, spitting, kicking and strangling was involved and I was on the recieving end of it. I am not able to get the help a victim of domestic violence can because it is not my wonderful husband that hurts me its my son.

I do hope people who follow my blog understand a little of how our life is and maybe in time by me sharing this blog with as many people as I can awareness will be raised of the issues some people face with an autistic child with extreme challenging behaviours as I am sure I can not be alone in experiencing violence to this extreme from a child who knows no better.

I do not want sympathy as that wont change our lives but if you can do anything please ask others to read this blog because if this can help just one family in our position to know they are not alone I will have achieved something. Also I hope in sharing this people will understand or accept that little bit more that children like Ben do exist and to not judge before you know the full facts of what happend behind closed doors. So if you can share my blog please do.

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

Monday, 11 June 2012

Half term ends so do the problems, if only!!!

So the half term is over and we survived!! I have arms that could easily be mistaken for a dot to dot puzzle and bags under my eyes that could be mistaken for suitcases they are so big!! However weve done it and we have another six or so weeks of school before the dreaded summer holidays.

If I hear one more person telling me how sad they are to see their kids go back to school and the end of all the fun picnics, days out and enjoying time together I will scream. Why is it that so many people look down their nose at others who cant share that joy as if for some reason that means you love your child less. I can categorically swear that is not the case. I love my son so much I would do anything for him and to make him happy he is my life and my reason for living. Since having him I have found a whole different Jenny that I didnt know existed. A Jenny who will stand up and defend my son whenever needed and sadly this is something I have had to do far more times than I should have to. So just because I am pleased to see my son back at school doesnt mean im a bad mum I am just a tired mum who emotionally and physically can only cope with so much. I feel that admitting this is a sign of strength and honesty to myself not a sign of failure. I just wish other people could see that and not criticise!!

While I am on the subject of peoples comments, I am 31 its years since I left school and have no desire to return to the competitive days of the school playground. Children are wonderful in whatever shape and size and whatever their needs its no competition whos child is the brightest, sportiest, most disabled, cutest or has the most friends. Why do people feel the need for the competition. Yes my child is physically able but will he ever be able to live independantly?? My child might not have lots of friends (or any really if truth be told), but he has achieved something far more precious this week, he spoke on the phone to someone and without prompting asked them a question instead of talking on his own agenda. This may be something other 6 year olds have been doing for years but for Ben it was an achievement I am proud of.

What I have found so heartbreaking recently is my lovely little boy who so wants to have a friend but cant cope with the sharing and social skills needed for a two way friendship is potentially going to always be like this, or for quite some time at any rate. Ben has been asking a lot lately to have someone around to play. As those who have been following my blog will know recently Ben had a boy over for tea and to play. This was the son of his respite carer who is very understanding of Bens needs however he is still a young boy who is a few years older than Ben, much more mature and at the end of the day can only take so much of Bens meltdowns and aggression. I dont blame this lad at all he cant be forced to be friends with someone he doesnt want to be friends with. Its become obvious recently this boy has no desire to come and play or have tea again and i totally understand that. However Ben now has the idea of friends coming to play and has asked every day for the last few weeks when he can have someone to play. I am Bens mum I should be able to make him happy and I cant and this breaks my heart.

When i was a child I played with a girl up the street, siblings, and sometimes my similar age cousins. I went to a kids youth club and was in st johns ambulance, not particularly exciting activities i know but it meant even a shy child like me could meet other kids, make friends, talk about the latest kylie and Jason records and play like any child should. Ben doesnt have any siblings and never will its just not biologically possible (and if one more person who knows this fact tells me i should have another child im liable to loose it with them!!!). We dont have any other kids locally he could get to know and he doesnt cope with clubs etc he needs a quiet simple one to one situation. My friends either have much younger kids, live miles away or have kids who are not lonely like Ben so they dont see why an invite for a playdate means so much for Ben. All Bens classmates have siblings to interact with or family/friends with similar age kids. All I want as his mum is for my son to be happy, to have more than adults for company and for him to love and be loved. I feel an immense failure because I feel as Bens mum I should be able to make everything alright for him but I cant and probably will never be able to. For that I wish I could apologise to my son, for the fact he is lonely and I cant fix that for him, there is no magic medicine, operation or words that will make his life easier or happier and no amount of money will change this. It breaks my heart. So next time you hear me say i hate the school holidays maybe you will understand a bit more why, because it is a lonely time for us as a family but even more so for my son.

I dont want sympathy just understanding, and icecream if youre offering!!!!