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!!!!

Thursday, 7 June 2012

Half Term Blues and National Volunteering Week

Well here I am and so far survived 6 whole days of half term!!!! Its been very up and down here and quite a struggle but were all still here and alive so that is something to be thankful for, a little worse for wear and you could do dot-to-dot on my bruises but hey bruises fade and in a few weeks I will be having a nice break while hes at school bracing myself for the six week holiday!!! Anyway I will update more about half term when we have survived the full nine days!!

This week is National Volunteering week so I thought I would share a bit on my views of that. Over the years most of the help we have recieved for Ben has been paid for by the government/system such a speech therapy etc. There isnt much in the way of voluntary help that we could get to help us with our struggles with Ben however we did have some help from Homestart with a lovely volunteer called Mary who helped with Ben for an hour or two once a week which was a huge help as at the time Ben was at home all the time as it was before he started nursery and Andy was working so from 6 in the morning until 4/5 at night it was just me and Ben. During that time Ben had no language, was very destructive and only sleeping around 4-6 hours a night. Homestart and Mary were truely a life saver, by having her come weekly it meant I could have an adult to speak to and play with Ben while I put the washing out or tidied up the latest mess created by my little whirlwind!! If anyone reading has not heard of homestart and could spare a few hours a week to help a family it truely is very worthwhile. I hope that one day I can give back and volunteer for them.

We have also had some help from volunteers in the way of little (or not so little) bits of help we have had from places like the National Autistic Society, IPSEA and SOSSEN who offer advice lines and support with education problems. I know nothing of these people and why they volunteer, I do not even know their names but at times those little bits of help and advice have just made a huge difference.

So for National Volunteering Week I want to just say everyone can volunteer to help someone and it doesnt take a saint or someone with lots of spare time to volunteer, every little helps as they say. You are probably reading my blog because you either know me or are interested to know how we cope with such a violent child who requires such supervision and support every day and wonder how I even have time to think about volunteering for anything but you know what I do. I dont do anything too spectacular and it doesnt take much time but I want to give my bit back to society and help people where I can.

I volunteer with postpals charity ( and send cards, letters and small gifts to seriously and terminally ill children and their siblings to make them smile. Although I find this very hard at times I know that my few words can help brighten up the day of a child who really needs it. It may sound selfish but sometimes I do it because it is a way to take my mind off the life we have at home and the tears I cry for my son and the life he hast got that I wish he did. I know he is not terminally ill and doesnt have the illnesses these children do but in my eyes his life isnt normal and never will be, just for different reasons. Sometimes it is just nice to know other people struggle too. I know that sounds selfish and maybe people will think less of me for saying it but I started out this blog with the intention of being as honest as I can and I intend on carrying on being as truthful as possible. I am the coordinator of the postpals monthly projects scheme and assign volunteers to buy a small gift for a set child each month with the aim of getting all the postpals children assigned to recieve a gift every month within that months theme. Sometimes after a stressful day its the last thing I want to do and I sometimes have days off where I shut myself away and dont do a thing for postpals but then I pick myself up and carry on because I want to do every bit I can for these children in a way I hope if Ben needed it other people would for Ben.

Could you volunteer and help someone somewhere?? If I can be doing ti doing my hectic half term with Ben which I am sure I will be able to write more about in my next blog, then so can you!!

Finally, only 3 more days of half term and I have survived so far, a little worse for wear but still hear and still battling!!! I can survive and I will survive!!

Smile and everyone smiles with you, keep smiling!

Thursday, 31 May 2012

Half term is coming in 10 days will I be smiling or screaming?!?!

So the dreaded half term is looming. One more day of school then 9 days off. We have one day of respite planned about a 5 hour session that day so a bit of a break. Its always a testing time in our house because of the change in routine for Ben and the fact that there are so many hours in a day (in Bens case around 18 hours awake a day). So all those hours and everywhere is so busy it makes it hard to find places to take Ben where he will cope. If you have a "normal" child or think back to your childhood where do you think a child would want to go?? Theme park/ museum/ park/ farm/ zoo/ seaside/ bowling/ cinema?!?! Now imagine you are six and busy places make you feel stressed and all the unpredictable stuff going on makes you want to scream and push your way out of the situation so you can have your own personal space back. So many people see that we take Ben places and then get upset when we turn down their invites to go places and do things. Its hard for other people to understand but when we go places it has to be planned down to every last possible eventuality and as his parents we have to be physically and emotionally prepared for the fall out after a change of routine and the difficulties we face afterwards. So just because one day we can cope with these problems doesnt mean we can another. I wish things were different and that we could do all these things I would love to do with my son but the reality is everything has to be made autism friendly or rather Ben friendly as although he is autistic he isnt the same as an autistic child you know or your friends brothers cousins friend. Autism may be one word but the way it affects every child is so very different and the way it affects any one child on any given day may be very variable to. Autism can be so unpredictable, so hard, and so very heartbreaking as a parent if you are not a parent of a child with autism you can only imagine how the rejection, difficulties and pain affect a parent of an autistic child.
So what do we have planned this half term. Mostly indoor/at home activities and going to quiet places. So while most people dont want a dull day that looks like it might rain at half term or a weekend its perfect for us as my first thought is if it means we can take my lovely boy somewhere which is normally busy so he can enjoy the kind of day out most children take for granted a day of fun stress free! Our plans consist of a water bomb game in the garden, planting seeds, crafts, writing letters, library trip,  jubilee fun day for ben and teddies, chalking the patio, baking, and making a time capsule amongst other things. I can't wait to have a lovely week with him, they might not be the most exciting things to do but Ben will enjoy them and I love to see him happy.
So, this half term may be stressful in some ways but I do know one thing, Ben is growing up and I love him to bits if I can make more memories of good times and try to cope with the bad then thats the best I can do as his mum. I want to be the best mum I can be, I might not always be tolerant when he hurts me but I am loving too and I have all these ideas in my head to try to give Ben the best life I can despite all his difficulties. If people dont understand that we put Ben first then they dont count Ben is my life he cant tell people what he can and cant cope with he relies on me and I am determined to do that to the best of my ability!
Half term starts tomorrow the next week or so of blog posts could go either way wish us luck :-) but my final thought, one that has been with me for years long before I had Ben is a phrase I once heard and is so true.
Happiness is not the absense of problems but the ability to deal with them

Tuesday, 29 May 2012

Why i am so tempted to have my headshaved

I regularly toy with the idea of having all my hair shaved off. Why you ask would any woman choose to shave her hair off. The reason is i am beaten everyday by my son because of his autism i cant find anyway of stopping him and short of wearing hugely padded clothing head to toe including my face im stuffed really. However he also pulls my hair so hard that every day he pulls loads out and my scalp is permanently so sore it hurts every minute of the day and even more when i brush/wash my hair.
So to have it all shaved would save me lots of pain but do i have the guts to do it? I dunno.

Monday, 28 May 2012

A lovely day out with my gorgeous boy

Yesterday we went to meet Horrid Henry and the author of the Horrid Henry books Francesca Simon. Ben had a wonderful time and coped so very well, with lots of prompting he chatted to her and got his book signed. It truely made his day as he understands about authors as he loved books so much he has been learning lots about contents, indexes, page numbers, authors, illustrators etc so that made it extra secial to him that he knew who she was and why she was special as she had written all the books! While we were in Meadowhall we went in a few shops together and Ben coped so very well, it was like having a different child. Then after the trip to meadowhall we were invited to a barbeque and Ben continued to cope really well. I truely was a proud mummy we havent had such a good day with him for such a long time.

Sadly when we got home Ben showed his other side and was very physically aggressive again and showed how doing something out of routine and stressful for him really takes its toll. People see how good he can be and rarely realise that we have a huge nightmare following this as he struggles so much to deal with the different events of the day and how overwhelming he found it. It is times like this when I hate autism so much for what it does to my gorgeous boy.

I couldnt thank Francesca Simon and the staff involved in the book signing event it was pretty well organised and made my little mans day, week, month and year. It truely was a day he will always remember as he loves Horrid Henry so much and was so proud to have met "the real horrid henry!" and "a real author, not a pretend one mummy but a real author who writes real books"!!!!! As you can see on the photos he wore his Horrid Henry T-shirt bought for him by his godmother Julie who he loves so much and thought she was amazing when she bought him the t-shirt last birthday!! He also took his Horrid Henry doll which he got for his birthday also, from his Nana and Grandad, he is such a fan he was so proud to be the only child there with the doll and t-shirt and he looked fab. Look at that smile you can see how much he loved it. That little smile he looks like hes a little angel all the time, if only it was that easy. I hate autism and all the issues Ben has but I love him so much and that lovely smile when we do see it makes everything so worthwhile!

Saturday, 26 May 2012

The ups and downs of the last week

Ben with his face painted as spiderman - a good day!

Well the school photo proof was lovely I can't wait to get my copy. This week we have had good and bad. On the positive side Ben loved his swimming lesson and is slowly improving. We have taken him after school to the local designer outlet and treated him as he was so good and coped so well. As Ben loves maps and is fascinated with all that kind of thing we got him a new world map for his wall and we are putting a little star sticker on each country as he collects a postcard from there!! Ben has enjoyed Bible stories and saying prayers this week and at times almost been "normal" which is heartbreaking as he so wants to do things he cant cope with and have friends to play. He has on one occassion (other than as a young baby) had a friend to play which went well but the problem is he struggles with changes to routine and if a friend has to cancel at the last minute as happened the other day he is inconsolable and takes that upset and anger out on me so we are unsure whether to plan it again or not. Its also hard to know if the child actually cancelled for the reason said or if they didnt want to come. Ben had hit this boy a week before so its likely. Ben wants friends but cant cope with them its heartbreaking as a parent seeing your child so isolated with no siblings or friends to play with outside school. Its one thing I wonder if I will ever get used to.
On the less positive side of things I hate the summer because wearing summery clothes its harder to hide my bruises and bite marks. Its also a struggle as Ben doesnt understand privacy and appropriateness and is always trying to strip me and regularly rips my clothes in the process of trying this. Obviously summery clothes mean that at home and in public he finds this easier. Imagine the feeling of your son screaming at you because hes trying to undress you and every ounce of your strength is taken by trying to protect your dignaty. It breaks my heart and it kills me inside. How do you explain to a child that doesnt understand that yelling in the garden "let me see your nipples mum" is wrong when he is mature enough in other ways to understand some things and he can read pretty well.
Some of the professionals we have talked to about Bens violence have suggested we video tape his behaviour so they can see. Part of me thinks that they just dont believe us about how he is - though hes shown some violence in school and with a portage worker when he was younger. He isnt as severe in his violence at school as he goes to a special needs school with a very routined structured day so there is minimal change to routine and I am not there. I am and always have been the main outlet for my sons violence. Often we cant see it coming as he is very spontaneous and often there appears to be no trigger to his violent bursts. So either we video him all day or we have to be lightening quick which isnt possible. I also am put off videoing him as i feel like its unfair on him as i know he cant help his behaviour and it feels like its wrong to try to catch those things on tape. Hes my baby im not ashamed of him im not wanting a different child. I just want a Ben that doesnt physically and emotionally hurt me. I want my child to say i love you and mean it and not follow it with another beating. I want less bruises and bitemarks. BUT I dont want to loose the boy I am so very proud of and I love him so much.
So please to those who know me in person next time you see me in ripped or scruffy clothes, with bruises or bitemarks, or generally just looking pretty fed up please remember I am trying my best and sometimes its harder than others to paint on that smile and i may have no clothes that i can wear that arent ripped and stand some chance of protecting my modesty etc.
As ive been writing this I've been keeping my fingers crossed that my sore eye doesnt bruise since Ben punched me in it and so far it looks promising I must say. See being overweight does have its plus sides I am sure i bruise less easily than i used to. More cushioning!!!

Saturday, 19 May 2012

School Photo Day

Yesterday it had been school photo day and the proofs Ben brought home were wonderful he truely is a little star! After school we went to the library (normal friday after school routine) and then came home for tea etc. Well then the violence started as usual he went from one side of the sword to the other lovely and adorable to hurting me and hitting me. I love him so so much but will it always be like this?? who knows but I know one thing, I will always love him!

Friday, 18 May 2012

Behind closed doors

Ben is my life, I love him so much but I also find him at times very hard to live with. Most people who know me know that he is violent and I often say this but I think very few people know how extreme his violence can be. I guess I hide it away because in some ways I am almost ashamed to admit what happens when people arent here. It also happens when out and about and when we are in the company of others but not many people know that this happens on as regular a basis as it does.

I know all children can have a bit of a meltdown or tantrum and hit out on occassions. The difference we have is that Bens violence is daily and not always caused by a typical reason like not allowing him something. Ben hits me regularly for what seems to be no reason at all. We constantly try to address all of the problems his autism brings and feel we are good at that and he can be such a happy child for example when he is looking at maps, watching the simpsons (when the adverts aren't on!) and playing on his computer. These are not the times that we find hard, nor are the times when we say no to something and he hits out, this is normal, maybe not all 6 year olds still do this much but Ben is still developmentally delayed in many ways so we understand he will have the typical odd toddler tantrums. Bens violence however is different and heartbreaking.

Imagine being hit, punched and kicked on a daily basis by your child, having all your body sore on a daily basis because of bruises and scratches. Imagine waking up every day and knowing that this will be another day of beatings and pain. Ben is very strong, he doesnt just slap, he punches, kicks, headbutts, bites, scratches, pulls hair and strangles. Ben grabs at every part of my body and pulls at my clothes, I own very few items of clothes that do not have some kind of rip or tear.

If I was to count how many times a day these incidents occur it would be impossible it is continual for most of the day, my only respite really is when he is at school, luckily he goes to a special school and gets the bus to and from school which gives us a reasonable break from him. We also get some respite so he goes out for trips out with a befriender and he enjoys this, some people see this as unnecessary and see us as scroungers for this but try for a minute to imagine a child that does not sleep well and every waking moment he is home he hurts me, then tell me that I shouldnt get some waking time without him! It breaks my heart that we need this help, I would give our benefits and help up in a heartbeat for a "normal" child who didnt hurt me daily.

So now you see a child who can read, is getting better at writing, and has good language doesnt mean he is only mildly autistic, it just means he has developed well in those areas he is still challenging in others, it has been a long time since I left the school playground, I am not in any way trying to say my child is worse than anyone elses or trying to boast about his achievements however I do think autism is a double edged sword the good and the bad. If you have met one child with autism you have done just that, met one child with autism, life behind closed doors can be very different and life isnt always as it seems.

On a positive note behind closed doors chocolate always brightens the day ever so slightly, as does a certain brand of icecream :) The next blog post I promise I will try to make more positive, I have just tried to make these first ones kind of outlining things as they are, the double edged sword isnt always bad, my boy is a little super star and makes me so proud in so many ways and I will never ever stop loving him despite the pain I experience from him.

From diagnosis til today

So, its been four years almost to the day since Bens official paper diagnosis and around four and a half years since his "most likely autism but we have to check out these other possibilities" diagnosis. So much has changed, good and bad, hence the name for my blog. Everyones perception of autism is different and every child with autism is different so unless someone has lived in anothers shoes who are they to judge how hard or easy your life is. I have found over the years this is something I need to keep reminding myself and keep reassuring myself that other peoples opinions are not relevant and they do not live here so do not know everything, they know what they choose to listen to and what I choose to tell them.

Ben has gone from being a non verbal child who was very classically autistic. Ben had no language at all, he was violent, severely delayed in all his skills and essentially like a baby in so many ways. Ben had only recently learnt to walk and was still clumsy and struggling with coordination. The diagnosis procedure involves a portage checklist which looks at a childs development against what it should be and Ben was behind in every area but he was my wonderful son, he was difficult to care for and extremely difficult to take out of the house but I knew I could never stop loving him.

Imagine going shopping and seeing a child who is 4, 5 or 6 and they are throwing themselves on the floor screaming, most peoples initital thoughts are that this is a naughty child and a mum who clearly cant control them, I mean what 6 year old lies on the floor screaming over a simple thing, and what kind of mother isnt embarrassed and acts like this is perfectly normal??? The answer, a mother of a child for whom this is normal, a mother who has adjusted to the stares of strangers, you are not the first person to stare and certainly wont be the last. A child in a wheelchair has a visible disability and people see a child like this and you can see in their eyes that they know the parents may have things hard, do people do that with the child who aged 6 and big for their age in aged 8 clothes is rolling around Tesco's screaming, no they think bad parents. Disabilities are not always visible.

Autism is such a spectrum, many see it as a line from severe autism to mild autism. What about children or adults who are severe in some ways and mild in others. I see autism as a double-edged sword, there is good and bad, severe and mild in everyone who is in some way affected by autism spectrum disorder. Ben is like this, the good is he has great language now, it developed late and he still has a lot of the typical autism difficulties with his social skills which mean he is unable to use his language as well as it may be possible if he had the social skills of a neurotypical 6 year old. Ben is academically very bright he takes in information and in many ways is a typical 6 year old in the work he is able to do, however again his social skills, his lack of imagination and his difficulties in thinking things through, in the same way as a neurotypical child, hold him back, a double-edged sword.

There is one other element of Ben which really does affect him and myself as his mum. Ben is very aggressive and violent, it is not through malace, though sometimes it feels as if it is. If my husband Andy ever treated me in the way my son does it would be over, domestic violence is not acceptable and rightly so, but violence from a child who does not understand what they are doing and can not control themself is accepted, we struggle to get any help for Ben for this, it feels like noone understands.

I love Ben so much, that will never change, he can not control his emotions well and does not cope well with change to his routine or with lack of control. Ben finds it hard to accept when things are not the way he expects and he does not know his own strength. Despite being six and a half Ben is tall and strong for his age he is loving and fun when he is happy but at the other side of the double-edged sword he is strong, violent and does a whole host of things that hurt me inside and out. More about that on my next blog as this is getting rather long!!

The start of the double-edged sword

This is a story/blog type thing I wrote back in August 2008, it really just sums up how I felt at the time and now I have decided to write a blog so although there is a big bit in between after this I will start from more recent events, feelings etc.

My son Ben was a planned baby and very wanted, it had taken almost 2 years to conceive him so when I finally fell pregnant nothing could burst my bubble. I had Hyperemesis Gravidarum so I was really sick my entire pregnancy and lost 4 Stones in weight (luckily I have plenty to loose!). Benjamin Oliver was born on 16th November 2005 after a 5 day slow labour, but still I didn’t care, my perfect baby was here all 9lb 1oz of him. Things went from bad to worse in my relationship and my partner became more violent and controlling, nothing I did was right I had to do all the household jobs and everything for the baby. He worked and played computer games and if Ben dared to cry he would shout and scream that he couldn’t hear the television. Essentially I was a single mum but I had my baby who was perfect in my eyes. He was slow to gain weight and had a heart murmer but I never worried I trusted the doctors they know best.

All sleepless nights, a baby that would not be put down but didn’t care who held him, a partner who wouldn’t help, a family who thought I was coping so didn’t offer support and dirty nappies everywhere started to get me down. Then Christmas day at five and a half weeks old Ben smiled. He was normal, he has smiled at the same time as expected. It was pretty hard to accept though that he had smiled at Grandad and not Mummy but maybe I shouldn't let that get to me.

What will Ben grow up to be, a fireman, a lawyer, a doctor, who knows but I did know he would do something clever. I was determined he would be taught everything he needs I would sing to him every day, read to him, get him educational toys, none of the electric rubbish parents buy to entertain their kids so they don’t have to give them any attention.

At almost 6 months Ben and I moved to my mum’s house as the violence all just got too much when his dad had been hitting my beautiful baby too – he was 2 months old when he first hit him. I had to get him out, protect my baby. Ben should be sitting soon but all the upheaval maybe that’s why he isn’t doing it, the poor little on doesn’t know what’s going on its bound to put him back a little. I lied to friends whose kids were doing it and pretended ben was too, they would never know! Is he sitting yet? Is he crawling yet? Has he started rolling over everywhere? No, no, no what was wrong with my baby? Never mind must be the stress of being at my mums.

Then at 8 months old we moved back to my house after Ben’s dad had left. Ben was sitting up now – see I knew he would do it in his own time he is just a little slow. Is he crawling yet? Does he try to pull himself up? No, not yet but he has been through a lot he will do it in his own time. All of this time Ben never cared who was with him as long as he was not alone.

Then by 11 months still no crawling. What is wrong with him? Maybe he will just walk, so many people have told me this I start to believe it but something just tells me maybe not. I spend all day every day trying to get him to crawl. A few weeks later not long before his first birthday Ben crawled. Then choruses of everyone we knew “see I told you he would” and “what were you worrying for” but I just knew he wasn’t just lazy it was something else. Still no babbling though maybe that will come soon now too? Ben’s health visitor was so reassuring “they all do it in their own time try not to worry he will be fine”.

I started back at work when Ben was just over a year old, he went into a nursery but had to stay in the baby room “we only move them up when they can walk”. All the others were much smaller than my big boy was but they assured me he would be walking soon enough. The stress of being a single mum was getting to me, I had a new partner but only saw him at weekends. I wanted a baby to be proud of, to laugh with other mums about what he was saying, doing etc but no I got Ben. Why did he hate me? Why did he not want to fit in? He started saying ca repetitively so I stopped worrying he would talk soon why am I panicking. Ben also started to bang his head on the floor repetitively he kept getting bumps on his forehead. I left work and my partner moved in, I didn’t want my baby in nursery anymore, he wasn’t progressing there he would be better at home with me I would sing to him, read to him and we would catch him up soon enough if I tried hard enough. Before we knew it ben was almost 18 months and nothing had changed he didn’t have the normal 6-20 words so I persuaded the very reluctant health visitr to refer him to speech therapy. The speech therapist asked him lots of questions and basically said eh would get there in his own time, a speech therapist would come to help us learn to talk and sing to him as that would help if we did it “properly”. I asked could it be autism – I only knew a little about it but this was my biggest fear. Her response was “no I’m sure its not don’t worry about anything like that all kids get their speech at different rates he will catch up”. Well she is the professional I was wrong silly me worrying too much over nothing. I went to the doctors to get my anti depressants increased I was obviously just worrying and stressing about nothing.

At 20 months Ben spoke, he could say duck, car biscuit, night night, banana, not clearly but it was coming. They were all right I was worrying about nothing he was just a bit slow. Why wouldn’t he say mummy or no though? Maybe I am just being paranoid he is only 1 plenty of time yet. Then finally ben was trying to walk, my baby was normal why did I worry, how stupid did I feel now! Then it all started to go wrong. Ben’s speech disappeared completely, Ben changed as a child, wasn’t interested in anything anymore. Maybe he never was and I just kidded myself to think he was normal? I got referred back to speech therapy, put on a list so getting somewhere or so I thought. Eventually we saw a speech therapist who told me he was fine, nothing wrong. Obviously its all me getting depressed again I just see these things that aren’t there and worry over nothing.

Then I went to a Sure Start group for children with additional needs. In my mind I only went to reassure myself Ben was normal, looking back I feel so nasty to have gone with that attitude but that’s how I felt at the time. They were normal children – well what I knew as normal, they were like Ben, should they not have been there? Were they normal and I was confused about the group? Or was Ben different and they were too but they looked normal? I got talking to one fo the mums, here sons were like Ben but they were autistic. Is Ben autistic? Is their diagnosis wrong and they are just not as quick as other kids to develop?

I told my friends and family I think Ben might be autistic, “don’t be daft”, “he looks ok to me”, “he is just slow to develop”, “don’t worry” and my **** didn’t speak for ages he was too busy playing but he’s fine”. Was I wrong? Were they wrong? What exactly is autism? Is it just a naughty child whose parents have no control? Should I try harder with Ben? Should I go back to the doctor about my antidepressants?
We were referred to the paediatrician for Ben to be assessed so I guess I wasn’t the only one who thought something could be wrong. The staff at the sure start centre told me he was just naughty though and he was normal. Who is right a mum who this is their first child or someone who works with children everyday?

The paediatrician suspected autism and said this is most likely but wanted to rule out brain damage form his abuse as a baby. Had his dad caused all of this and then disappeared and never had to deal with the consequences? It was my fault I didn’t protect him well enough, I am a bad mum, should I phone social services and report myself? Ben had assessments, scans, and blood tests. We had to wait for results, can’t they fast track them? I need to know now not in months to come!

Then in May 2008 the answer came Ben is autistic. But with an answer there should be a solution surely? No solution, no answers just one word and referred for more support and lots of questions no one can answer. We live each day and night hoping things will improve but they feel like they are getting worse, at least I know I am not the only one living a life like this and I know it must be harder for Ben in a world he does not understand unable to talk. I still don’t have the answers, what will Ben become when he grows up? Will he need to live at home as an adult as he needs the support? Will he ever speak? Did I do something wrong to make him autistic? Am I a good mum? Could someone else do better? Should I try to find a better mum for him? Why me?